There are reports all over the news about how measles is making a comeback. There are also worries about the bird flu pandemic. Biological warfare is always in the back of everyone's minds during this time of war. Although all of these things are legitimate issues that need government's attention, I can think of another war that is being fought right now. I can also think of another epidemic that is being ignored. It is the war on the Autism Epidemic.
Let's define the word epidemic: "the occurrence of cases of disease in excess of what is usually expected for a given period of time." I found an article written in the Los Angeles Times newspaper that stated: [One answer that researchers do have is that California is probably not unique. “There is absolutely no doubt the numbers are going up nationwide, even worldwide,” said Dr. Eric London of the National Alliance for Autism Research. Between 1975 and 1985 studies showed the worldwide rate of autism to be about 4 cases per 10,000. Between 1985 and 1995, the numbers tripled to 12 per 10,000. But researchers believe that the actual rate may be much higher, on the order of one in 500 children.] This article was written on April 16th, 1999. Did you notice what the last rate was? One in 500 kids were believed to have autism. NOW.... in the year 2008, the autism rate is one in 150!!! You do the math.
We are at the point where it can no longer be ignored. Something is happening to our children, our babies, our future! The kids that are diagnosed with autism will one day become adults with autism. Can you imagine the billions of dollars it will cost? We had approximately 301,139,947 people in the U.S. in 2007. If we take the rate of autism and do the math then we get approximately 2 million people who statistically have autism. That number will only go up unless something is done about it. Since money seems to talk I thought I would add that bit of information.
Now.....on a more emotional note.... I see parents everyday who struggle with life issues concerning their autistic child. Unless you have walked in those shoes there is no way you can know. Not only is it financially draining (all the tests, trips to doctors, medicine, special services, etc....), but it is also emotionally draining. The rate of divorce is very high among the Autism community. It can lead to depression and feelings of inadequacy. There is also the social stigma that is attached to it. Since these children typically look like other children it is hard for others to know. It's not until the children are much older that usually the signs are more obvious. Therefore, parents have to deal with the comments and unsolicited advice while the kids are very young.
There is a general ignorance among the medical community on how to handle children with autism. They don't offer any hope or help in treatment. Most parents feel like they have to resort to websites, books, or other parents for help. The danger with this is that there are people out there who will prey on parents who are so desperately seeking help. I have found numerous websites that have financial gain as their primary motive. They are either selling services or products. PLEASE BEWARE of these sites! There are actually "treatments" that can hurt your child. If you are lucky to find a doctor like Dr. Corbier who has done his research and is willing to combine alternative medicine with Western Medicine, then you can always get ideas validated.
The CDC may argue that enough research has been done to rule out vaccines as a cause or "trigger" for autism.... I have to disagree. There is not enough evidence to say that vaccines are NOT the cause or "trigger", and I think that the public deserves the right to know. Since vaccines are mandated and in some places children cannot attend school unless vaccinated, that basically voids some of our basic rights as Americans. I have already posted my feelings on vaccines and so I won't waste your time repeating myself.
This is a list of all the tests the CDC has done on vaccines as it pertains to PDD or Autism: http://www.cdc.gov/ncbddd/autism/documents/vaccine_studies.pdf
At first glance, one might think that they have actually done a good job in trying to figure out if there is a link. The first test: "Denmark MMR/Autism Study" says that they followed 500,000 kids for 7 years! Wow!! That sounds so impressive, right? Well....here is what they failed to tell you and the proof to show you how the CDC will do whatever it takes to make data fit their needs: [while the study methodology appears to be good, and there is much to learn from the informative findings, there are some significant shortcomings in the conclusions drawn and the study results raise more questions than they answer and underscore the importance for more research. For example, one of the most concerning omissions of the study was their failure to consider the absence of Thimerosal in the other infant vaccines the children of the Danish study received prior to getting their MMR vaccine.
Although she did not include it in her article, the reporter from the Dallas Morning News who interviewed me ...was able to confirm that the mercury based preservative under so much legal fire for triggering autism was removed from vaccines on the market in Denmark prior to the birthdates of the children studied. American children on the other hand, have potential cumulative mercury exposures at sometimes neurotoxic levels from prenatal exposures including maternal vaccination and immune globulin preparations, environmental pollution and infant vaccinations which create a significantly different set of circumstances when the MMR vaccine, which does not contain mercury, is administered.] (Taken from online resources.)
In other words, all they did was study the MMR vaccine as the single factor or "trigger" in causing autism. Even then, the study was flawed because: [They have not satisfied the question of the MMR vaccine's potential role as a trigger amidst other environmental factors including previously administered mercury containing vaccines that have been given to children outside of their population. It is entirely possible, but not yet studied by the CDC, that a child's immune response, inhibited by the elevated mercury levels from thimerosal-containing vaccinations, has less ability to respond to the measles virus in the MMR vaccine. This might be an explanation for the presence of measles virus cultured from the brains and guts of 80 percent of autistic children. ]
In case you don't want to take MY word for it.... Here it is from the horse's mouth themselves... the CDC in a March 29, 2008 interview (you can even see videos):
http://www.huffingtonpost.com/david-kirby/can-vaccines-cause-autism_b_94040.html
They admit that they haven't been able to rule out the possibility of causation. They say, "We just don't know...." That sounds promising. As long as they realize that there is a possibility then perhaps we have a chance of finding out for sure. The biggest problem with this issue is that there are soooo many factors involved. There is the genetic component to it. There is also the environment. How can they do a valid scientific study unless they look at all of it? They can't.
The biggest issue I have is that they still don't think of autism as an epidemic. They still don't want to admit that there are numerous examples of children who are born healthy and "normal" and then regress. There are also numerous examples of children who RECOVER!! How can that be? If autism is just a matter of genetics then how can a child recover? That would not make sense. They also don't want to look at the independent studies that are being done. There are toooooo many conflict of interests in the government-based studies. There are billions of dollars at stake. How can they be unbiased? They can't!!!
I promise you that there will definitely be more posts on this subject to come. I need to do a little more organizing of thoughts and research to validate some of my theories and findings. I have done almost three years of research and I have some very interesting theories to propose. I feel a little bit of hope in that it is only a matter of time before the medical community has to admit that they were wrong. My only concern is that in the meantime children will have to suffer in the hands of those who have sworn and made an oath to protect them.
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'Tis a lesson you should heed,
Try, try again.
If at first you don't succeed,
Try...try again. ~Thomas H. Palmer
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Monday, September 29, 2008
Friday, September 26, 2008
What do I REALLY think about vaccines? (uncensored version)
Many doctors think that parents who don't vaccinate their children or who are cautious about it are uneducated or ignorant. This couldn't be farther from the truth! You would be surprised to know how many parents are actually in the medical field. Let me state MY credentials: I graduated Cum Laude from college with a degree in Biology with a Pre-Med option. I completed a one-year internship in the Medical Technology program at a local hospital and was offered a job at another hospital upon completion. I received my ASCP certification and worked in the laboratory for five years. I specialized in Chemistry and Microbiology. Last, but definitely not least, I am a mother of four beautiful children and I have approximately twelve years of parenting experience. That about sums it up!
*Disclaimer: first of all, I never have and never will claim that I am a doctor or a specialist in medicine or vaccines. I am a mother who feels that parents should be given ALL the facts. I am a mother who thinks that the majority of parents are smart enough to make their own decisions about their children's health. I am also a mother who insists on doing all I can to ensure that vaccines are as safe as they can be with today's technology!
The first time I heard about vaccines causing autism was when I took my daughter to see a pediatric neurologist. His name is Dr. Corbier and I would recommend him to anyone living in North Carolina. He used to have an office here in Alabama but recently relocated. I really miss him. Anyway, he mentioned that he had seen children have autistic symptoms after receiving vaccines. He told me that there were many people in the medical community who suspected that vaccines might be the cause for many neurological disorders. I was floored! I had heard about these claims before but never from a medical professional. Could my daughter have been damaged by the same thing that was supposed to protect her? It couldn't be?!
This was a big turning point for me. From that moment on, I did my research. I went online and read medical journals, read tons of books, found CDC websites, and then I found some wonderful organizations for parents with children who have autism. I began to read the stories of parents who had given birth to normal healthy kids but who now were autistic. I also read stories of recovery and hope. I began to see a trend. It seemed like the pattern was: parents suspect something is wrong after vaccines are administered....doctors either ignore it or say there is nothing wrong 'cause child is too young....then it's the "wait and see" attitude that occurs....followed by "let's test"....then FINALLY after a year or longer , the diagnosis.
The problem is that most parents don't know what to look for. Let me tell you...a newborn baby cannot talk, right? So all they can do is either cry or scream to let you know they are in pain. Well...if your child has more than just a few minutes of "fussiness" after a shot is given then there is definitely something wrong. My biggest concern is that most parents are told to give their child Tylenol or another type of pain-reliever and so they are taught to expect some of the behavior. That was the case with my children. My oldest came home with fever, fussiness, AND at times would arch his back from the pain. I gave him Tylenol with the following shots because I hated to see him that way. I just thought it was a "normal" thing. I had no idea! Then with my #2 it was worse. He was smaller than my first so I bet his little body was overwhelmed. I remember how he would cry so much that he would fall asleep from exhaustion. He would clench his fists and just scream! Again, I just thought this was normal. My daughter had episodes where her hands and feet would turn blue. I called the doctor's office and they just dismissed it. They said it was normal because her circulatory system was still developing and so if she got cold it would happen. However, this was when my daughter was about 18 months old! I remember calling my friend and asking her about it. She wisely told me to seek another opinion and to take her to a specialist. Unfortunately, I didn't listen to her until months later.
What kinds of things should parents be looking out for? Doctors say that fussiness, fever, swelling at injection site, temporary loss of appetite, followed by sleepiness are normal. Although I have issues with that, those are not the important signs to be watching for. The things to be looking out for are: changes in behavior, loss of eye contact, inability to soothe or be consoled, SIDS, changes in bowel movement or digestion, increased sensitivity to sounds or sights or smells, changes in appetite, and anything that is "out of the norm" for your child. As a parent you are the first line of defense. That means that you will notice something waaaaay before the doctor will. It's a known fact that parents tend to compare their children to others and ironically that CAN be a good thing. Sometimes parents are blinded by their love for their children and so it's a good "check and balance" for milestones. For example, if you have a child that is 18 months old and they still have not said their first words and you see how others the same age are already able to communicate then that will be a big "red flag" for you to check it out.
I am going to go on record and say that I am NOT anti-vaccine. I have a few friends and family that think I am insane for continuing to vaccinate my children. However, I still think that vaccines work! I understand the physiology of the immune system and how the body produces antibodies, etc.... I also think that although our technology and health care are advanced enough to take care of some of these diseases, why put my child at risk and have him suffer? That is why it makes me SO MAD that they put all of these toxins in the vaccines. Why can't they make them safer? Well....let me tell you the answer: MONEY!
The reason that they added thimerosal to vaccines was because it was the cheapest way to preserve the vaccine and reduce bacterial contamination. You see, some of the vaccines come in big vials and when your child gets the shot they take a syringe and pull what they need out. That way, they can use one vial for multiple patients. That is why contamination is one of the biggest issues with vaccines. For a few cents more they could put them into separate syringes. However, doctors don't want to do that. My doctor won't order separate measles, mumps, and rubella because he told me that they have to get them in "batches".... well, as many patients as he has, I am sure they wouldn't go to waste. He just doesn't want to spend the few extra dollars that it would cost.
Check out this website: www.cdc.gov/vaccines/programs/vfc/cdc-vac-price-list.htm (just copy and paste to go there)
Let me give you a good example: the MMR vaccine costs about $46.54 ...but the NEW MMRV (which includes the varicella or chicken pox vaccine) costs $124.37. The varicella alone costs $77.51. You do the math: $46.54 + $77.51 = $124.05... that's about the same price and actually a little cheaper, right? So....why is it a big deal for the doctor to push for the MMRV? Well...it's because getting the MMRV is a sure $124.37 plus their mark-up, plus the doctor's visit. It's so obvious that vaccines are definitely a money-maker for the doctors. Don't let them tell you otherwise.
The first time I heard about vaccines causing autism was when I took my daughter to see a pediatric neurologist. His name is Dr. Corbier and I would recommend him to anyone living in North Carolina. He used to have an office here in Alabama but recently relocated. I really miss him. Anyway, he mentioned that he had seen children have autistic symptoms after receiving vaccines. He told me that there were many people in the medical community who suspected that vaccines might be the cause for many neurological disorders. I was floored! I had heard about these claims before but never from a medical professional. Could my daughter have been damaged by the same thing that was supposed to protect her? It couldn't be?!
This was a big turning point for me. From that moment on, I did my research. I went online and read medical journals, read tons of books, found CDC websites, and then I found some wonderful organizations for parents with children who have autism. I began to read the stories of parents who had given birth to normal healthy kids but who now were autistic. I also read stories of recovery and hope. I began to see a trend. It seemed like the pattern was: parents suspect something is wrong after vaccines are administered....doctors either ignore it or say there is nothing wrong 'cause child is too young....then it's the "wait and see" attitude that occurs....followed by "let's test"....then FINALLY after a year or longer , the diagnosis.
The problem is that most parents don't know what to look for. Let me tell you...a newborn baby cannot talk, right? So all they can do is either cry or scream to let you know they are in pain. Well...if your child has more than just a few minutes of "fussiness" after a shot is given then there is definitely something wrong. My biggest concern is that most parents are told to give their child Tylenol or another type of pain-reliever and so they are taught to expect some of the behavior. That was the case with my children. My oldest came home with fever, fussiness, AND at times would arch his back from the pain. I gave him Tylenol with the following shots because I hated to see him that way. I just thought it was a "normal" thing. I had no idea! Then with my #2 it was worse. He was smaller than my first so I bet his little body was overwhelmed. I remember how he would cry so much that he would fall asleep from exhaustion. He would clench his fists and just scream! Again, I just thought this was normal. My daughter had episodes where her hands and feet would turn blue. I called the doctor's office and they just dismissed it. They said it was normal because her circulatory system was still developing and so if she got cold it would happen. However, this was when my daughter was about 18 months old! I remember calling my friend and asking her about it. She wisely told me to seek another opinion and to take her to a specialist. Unfortunately, I didn't listen to her until months later.
What kinds of things should parents be looking out for? Doctors say that fussiness, fever, swelling at injection site, temporary loss of appetite, followed by sleepiness are normal. Although I have issues with that, those are not the important signs to be watching for. The things to be looking out for are: changes in behavior, loss of eye contact, inability to soothe or be consoled, SIDS, changes in bowel movement or digestion, increased sensitivity to sounds or sights or smells, changes in appetite, and anything that is "out of the norm" for your child. As a parent you are the first line of defense. That means that you will notice something waaaaay before the doctor will. It's a known fact that parents tend to compare their children to others and ironically that CAN be a good thing. Sometimes parents are blinded by their love for their children and so it's a good "check and balance" for milestones. For example, if you have a child that is 18 months old and they still have not said their first words and you see how others the same age are already able to communicate then that will be a big "red flag" for you to check it out.
I am going to go on record and say that I am NOT anti-vaccine. I have a few friends and family that think I am insane for continuing to vaccinate my children. However, I still think that vaccines work! I understand the physiology of the immune system and how the body produces antibodies, etc.... I also think that although our technology and health care are advanced enough to take care of some of these diseases, why put my child at risk and have him suffer? That is why it makes me SO MAD that they put all of these toxins in the vaccines. Why can't they make them safer? Well....let me tell you the answer: MONEY!
The reason that they added thimerosal to vaccines was because it was the cheapest way to preserve the vaccine and reduce bacterial contamination. You see, some of the vaccines come in big vials and when your child gets the shot they take a syringe and pull what they need out. That way, they can use one vial for multiple patients. That is why contamination is one of the biggest issues with vaccines. For a few cents more they could put them into separate syringes. However, doctors don't want to do that. My doctor won't order separate measles, mumps, and rubella because he told me that they have to get them in "batches".... well, as many patients as he has, I am sure they wouldn't go to waste. He just doesn't want to spend the few extra dollars that it would cost.
Check out this website: www.cdc.gov/vaccines/programs/vfc/cdc-vac-price-list.htm (just copy and paste to go there)
Let me give you a good example: the MMR vaccine costs about $46.54 ...but the NEW MMRV (which includes the varicella or chicken pox vaccine) costs $124.37. The varicella alone costs $77.51. You do the math: $46.54 + $77.51 = $124.05... that's about the same price and actually a little cheaper, right? So....why is it a big deal for the doctor to push for the MMRV? Well...it's because getting the MMRV is a sure $124.37 plus their mark-up, plus the doctor's visit. It's so obvious that vaccines are definitely a money-maker for the doctors. Don't let them tell you otherwise.
Okay....now I am going to touch the subject of the new Gardasil vaccine. Go to CDC website on the VAERS report on the vaccine: http://www.cdc.gov/vaccinesafety/vaers/gardasil.htm
This is not a "quack" website....this is the actual CDC website that regulates vaccines and medicines. Do you see how they downplay the reactions? Do you see how they still have some reports "pending further investigation"? Did you catch the part where it says, "VAERS defines serious adverse events by the Code of Federal Regulations as adverse events involving hospitalizations, death, permanent disability, and life-threatening illness." Did you see how they placed "death" in the middle? I know first-hand how this works. We are in the process of trying to report autistic symptoms as a side-effect of vaccines with our daughter through the Omnibus Trial Hearing. We already got our first response and you know what it said? First, it said that we might have missed the statute of limitations. Secondly, it states that we haven't proved our case because we didn't take our daughter to the doctor immediately after the vaccine was given! You see....we CALLED the doctor and they said everything was fine. Remember? Also, when we finally saw the doctor, he didn't put anywhere in his notes that we were concerned about her symptoms. It didn't say anything at all! So, it looks like it was another "well-baby" check-up!
Please learn from my mistakes. Make sure to go to the doctor if you suspect anything. Also, make sure you have documentation. Don't just downplay your child's symptoms. Make sure the doctor knows your concerns and have some laboratory testing done if applicable. That will help you if you need it later. Lastly, don't ignore your instincts. I had a feeling deep within my gut that something was wrong with my daughter. I should not have ignored it. I trusted the doctor and I was disillusioned
In conclusion, if your child has an adverse reaction to a vaccine and the doctors won't acknowledge it then by all means STOP. Look for another doctor that will listen. There are so many things that can act as allergens in vaccines. As many of you already know, allergies can manifest itself in many ways such as behavior, physical, physiological, and even death. I still can't get over how doctors claim that there is no connection. Let me put it to you this way: if you have a child who eats eggs and he has an allergic reaction then you won't feed that child anymore eggs. That doesn't mean that eggs are bad for all kids, it just means that your child can't tolerate them. If you have other kids then you will probably test them for an allergy to eggs, right? You might even wait to introduce the eggs until they are a bit older.
Well... that's my take on the vaccine issue. Let's come up with a way to screen kids who might be susceptible or weaker. Let's wait at least a couple months before introducing all sorts of toxins and crazy ingredients into their tiny bodies and immature systems. New parents go crazy boiling water, sanitizing everything, and even testing toys now for lead. However, we don't think twice about injecting formaldehyde, mercury, and anti-freeze into our newborn babies. Makes sense to me........NOT!!!
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"We wish to state, very clearly, that we are not against all
vaccines, but we do believe there is strong evidence to
suggest that some of the ingredients may be hazardous
and that our children are being given too many, too soon!"
-Jenny McCarthy
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Wednesday, September 24, 2008
Here We Go Again.....
Today I took my #4 to the doctor for his "routine check-up" and to tell you the truth I was dreading it. It doesn't matter how nice I am, it always ends up being a debate about the vaccine issue at the end. I have learned not to take it personally and to be prepared with some valid and educated replies. I have been down this road many times.
I was fortunate to get my favorite doctor in the group. Although he doesn't agree with me, he respects me....or at least acts like it. All that matters is that I get to do what I want in the end. He doesn't make me feel like a bad parent or make me feel like I am crazy. However, I have noticed that lately my waiting time has doubled! Today I got there at 10:45am (appt. was at 11:00am) and I didn't see the doctor until almost 12:30am! I thought that was a bit long and I was getting a bit anxious. By the time the doctor stepped into the room, my child was so tired and hungry. He was not in the mood to be bothered. Somehow we managed to get through the physical exam and then he started to write some notes down. He paused for a moment, took a deep breath, and then out of the corner of his mouth muttered, "so...are we doing vaccinations today?" It was kind of funny. I knew that he was just dreading the question all along. I think I surprised him when I said, "yeah, we are." This is when the "fun" began.
He looked up at me and stood more erect and then I continued, "as you know...it looks like we have a genetic disposition for autism and you know how I feel about the whole vaccine-autism link... I want to be careful." He nodded and said, "Of course." I could tell he was waiting to see where I was going with this. I explained how I still wanted to do just one vaccine shot at a time and that I would like to figure out a schedule we could BOTH agree on. He was game! "That was easy, " I thought to myself. We agreed on a schedule and then it began....the discussion. He started telling me how there is no scientific proof that thimerosal in vaccines causes autism (although everyone knows that mercury is dangerous....remember those mercury thermometers?...and they were injecting that into babies!), but they have to take it out and his practice won't buy any vaccines with it for fear that they will get sued. Then he said that they did studies in other places where they took the thimerosal out and the autism rate still increased (a very flawed study since there is still thimerosal in flu vaccines and trace amounts in many childhood vaccines given today). He also started lecturing me about how it's just a coincidence that parents notice autism at about the same time kids get shots. (although you can't say that since babies get shots the first few hours of their life and continue to do so well into their 18th month)...."Here we go again....," I thought.
Well...I just listened and let him get it out of his system. THEN I chimed in...hehe... I looked him straight in the eye and said, "Now Doctor, you mean to tell me that even after everything that has happened with my kids and the difference there is with my #4 you won't even admit that there MIGHT be a chance that SOME kids are just predisposed to autism and that MAYBE vaccines are a trigger?" He said, "No way! There is just no proof. It's like you said...it's genetic." I continued, "What about metabolism? It's like my girl....she's got a metabolic disorder...maybe some kids can't metabolize stuff in vaccines...." Then he interrupted and said, "Oh..yeah, I forgot that she had Wilson's Disease. All her autism symptoms could be explained by that and she got better because you treated her." Then I said, "No...we didn't know she had Wilson's until recently and she got better waaay before then." (Do you see where this is going?)
I decided that it wasn't worth the time and I just stopped right there. I wanted to tell him that he was so closed-minded that he didn't want to listen to the truth. I also wanted to argue and prove my case, but deep in my heart I knew that he wasn't going to listen. THEN....I asked about the MMR. I asked if I could get separate shots. He explained how it's too expensive and they would have to buy a "batch" of them and the rest would be wasted. He said if I was willing to pay for the entire batch then he would do it. I asked how much it would cost and he gave me a "political answer" by saying that they charge about ten to fifteen percent above cost (which is bull) .....not giving me any specific numbers. He said I could try the health department but he didn't know of ANY doctors in our area that did them separately. I asked if any other parents had asked about it like I did and he said "a few" had. I wish I could get their names so we could go in together on a "batch".....that would be nice.
An interesting thing to note is that we discussed the different vaccines that my child had not been given. When we went over specific ones he mentioned how my child was too old to get them now. Then he said that polio was eradicated so didn't need to be on my priority list. Interesting, huh? Go figure....my child is 2 1/2 and didn't need those shots. So....he just proved my point today. Vaccines are all about money. If you have a healthy child and you live in the good old USA then there are plenty of vaccines that your child does NOT need. Parents are scared into giving babies unnecessary vaccines.
I have done my research and there are actually childhood illnesses that are worse if you get as an adult. Chicken Pox is definitely one of them. Ask anyone who has had the shingles! The only reason they have the chicken pox vaccine is because there are a lot of working parents who cannot miss a week or two of work. When I was a kid I NEVER heard of anyone dying of chicken pox. NOW.....all of a sudden they are spreading rumors of the numbers of children who have died in the past and how we have to vaccinate against it! That's crazy! There WERE children who died of complications due to chicken pox, but they were sick to begin with.....they were immunocompromised. Those children were already sick and the chicken pox complicated their condition. I think that if a child TODAY is in that subgroup then by all means vaccinate.... However, if your baby is healthy and normal then why bother? Even my mom said that she new many people who got the measles and it wasn't any big deal. The other day I saw an old movie on t.v. and one of the characters had the mumps and she was upset because she had to miss a date with a cute guy.....it wasn't any big deal. Her cheeks were all swollen and she had to stay in bed. So....I am asking you....is it REALLY worth the risk?
What about lifetime immunity. There is something to be said about that. When you get the chicken pox or other "childhood illnesses" then your body is immune to those things and you will never have to have a "booster shot" because your body is an amazing machine. They are already seeing that the chicken pox vaccine doesn't always work. That means that there are kids who get the vaccine and they still get chicken pox. So...their solution is to offer more "booster shots" and that should do the trick, right? Why is the vaccine not working with some kids? Why do we have to have so many vaccines and why don't we just let our immune system do its job? Let me ask you this: is it not better to get the chicken pox as a child, have lifetime immunity and be done with it...... OR is it better to get the vaccine and then hope it works, but if it doesn't then get it when you're older or an adult? I just think it's called a "childhood illness" for a reason.
I've had people ask me....but what if your child got the measles? They are beginning to see an increase in measles in some areas and it's because parents are not vaccinating. They say they might see an epidemic if something is not done soon. Well...that's a legitimate concern. Doctors should make the MMR vaccine available in separate shots so that parents like me have that option. However, I have a better question for them: would you rather your child get measles or autism? That is not a choice any parent should have to make. I think the chances of your child getting measles is a lot less than having some kind of neurological damage such as autism. Did you know that the rate of autism is now 1:150?!! Now THAT is an "epidemic"!!!
This is my final thought: the same way drugs are not a one-size fits all.... vaccines are not either. It is my belief that modern technology, better hygiene, better nutrition, and other factors have made it to where we live longer and healthier lives. A long time ago, people died from the flu... now unless you are very young or very old, it's unheard of. I know it sucks to be sick...however, it also sucks to die or to get brain damage from toxins that your body can't get rid of (by the way, thimerosal is not the only bad thing in vaccines). My point is that I don't think vaccinating against certain things is worth the risk of the vaccine in the first place. Everytime you give your child a shot you sign your name to give them permission and you also agree that you won't sue the doctor if anything goes wrong. They have a compensation program....but let me tell you, you won't get any money unless your child DIES or if you have documentation that something happened. Of course, doctors aren't going to admit anything happened cause vaccines are "safe"....so you're out of luck!
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Open your mind and you will see that the answer
is usually staring you right in the face.
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I was fortunate to get my favorite doctor in the group. Although he doesn't agree with me, he respects me....or at least acts like it. All that matters is that I get to do what I want in the end. He doesn't make me feel like a bad parent or make me feel like I am crazy. However, I have noticed that lately my waiting time has doubled! Today I got there at 10:45am (appt. was at 11:00am) and I didn't see the doctor until almost 12:30am! I thought that was a bit long and I was getting a bit anxious. By the time the doctor stepped into the room, my child was so tired and hungry. He was not in the mood to be bothered. Somehow we managed to get through the physical exam and then he started to write some notes down. He paused for a moment, took a deep breath, and then out of the corner of his mouth muttered, "so...are we doing vaccinations today?" It was kind of funny. I knew that he was just dreading the question all along. I think I surprised him when I said, "yeah, we are." This is when the "fun" began.
He looked up at me and stood more erect and then I continued, "as you know...it looks like we have a genetic disposition for autism and you know how I feel about the whole vaccine-autism link... I want to be careful." He nodded and said, "Of course." I could tell he was waiting to see where I was going with this. I explained how I still wanted to do just one vaccine shot at a time and that I would like to figure out a schedule we could BOTH agree on. He was game! "That was easy, " I thought to myself. We agreed on a schedule and then it began....the discussion. He started telling me how there is no scientific proof that thimerosal in vaccines causes autism (although everyone knows that mercury is dangerous....remember those mercury thermometers?...and they were injecting that into babies!), but they have to take it out and his practice won't buy any vaccines with it for fear that they will get sued. Then he said that they did studies in other places where they took the thimerosal out and the autism rate still increased (a very flawed study since there is still thimerosal in flu vaccines and trace amounts in many childhood vaccines given today). He also started lecturing me about how it's just a coincidence that parents notice autism at about the same time kids get shots. (although you can't say that since babies get shots the first few hours of their life and continue to do so well into their 18th month)...."Here we go again....," I thought.
Well...I just listened and let him get it out of his system. THEN I chimed in...hehe... I looked him straight in the eye and said, "Now Doctor, you mean to tell me that even after everything that has happened with my kids and the difference there is with my #4 you won't even admit that there MIGHT be a chance that SOME kids are just predisposed to autism and that MAYBE vaccines are a trigger?" He said, "No way! There is just no proof. It's like you said...it's genetic." I continued, "What about metabolism? It's like my girl....she's got a metabolic disorder...maybe some kids can't metabolize stuff in vaccines...." Then he interrupted and said, "Oh..yeah, I forgot that she had Wilson's Disease. All her autism symptoms could be explained by that and she got better because you treated her." Then I said, "No...we didn't know she had Wilson's until recently and she got better waaay before then." (Do you see where this is going?)
I decided that it wasn't worth the time and I just stopped right there. I wanted to tell him that he was so closed-minded that he didn't want to listen to the truth. I also wanted to argue and prove my case, but deep in my heart I knew that he wasn't going to listen. THEN....I asked about the MMR. I asked if I could get separate shots. He explained how it's too expensive and they would have to buy a "batch" of them and the rest would be wasted. He said if I was willing to pay for the entire batch then he would do it. I asked how much it would cost and he gave me a "political answer" by saying that they charge about ten to fifteen percent above cost (which is bull) .....not giving me any specific numbers. He said I could try the health department but he didn't know of ANY doctors in our area that did them separately. I asked if any other parents had asked about it like I did and he said "a few" had. I wish I could get their names so we could go in together on a "batch".....that would be nice.
An interesting thing to note is that we discussed the different vaccines that my child had not been given. When we went over specific ones he mentioned how my child was too old to get them now. Then he said that polio was eradicated so didn't need to be on my priority list. Interesting, huh? Go figure....my child is 2 1/2 and didn't need those shots. So....he just proved my point today. Vaccines are all about money. If you have a healthy child and you live in the good old USA then there are plenty of vaccines that your child does NOT need. Parents are scared into giving babies unnecessary vaccines.
I have done my research and there are actually childhood illnesses that are worse if you get as an adult. Chicken Pox is definitely one of them. Ask anyone who has had the shingles! The only reason they have the chicken pox vaccine is because there are a lot of working parents who cannot miss a week or two of work. When I was a kid I NEVER heard of anyone dying of chicken pox. NOW.....all of a sudden they are spreading rumors of the numbers of children who have died in the past and how we have to vaccinate against it! That's crazy! There WERE children who died of complications due to chicken pox, but they were sick to begin with.....they were immunocompromised. Those children were already sick and the chicken pox complicated their condition. I think that if a child TODAY is in that subgroup then by all means vaccinate.... However, if your baby is healthy and normal then why bother? Even my mom said that she new many people who got the measles and it wasn't any big deal. The other day I saw an old movie on t.v. and one of the characters had the mumps and she was upset because she had to miss a date with a cute guy.....it wasn't any big deal. Her cheeks were all swollen and she had to stay in bed. So....I am asking you....is it REALLY worth the risk?
What about lifetime immunity. There is something to be said about that. When you get the chicken pox or other "childhood illnesses" then your body is immune to those things and you will never have to have a "booster shot" because your body is an amazing machine. They are already seeing that the chicken pox vaccine doesn't always work. That means that there are kids who get the vaccine and they still get chicken pox. So...their solution is to offer more "booster shots" and that should do the trick, right? Why is the vaccine not working with some kids? Why do we have to have so many vaccines and why don't we just let our immune system do its job? Let me ask you this: is it not better to get the chicken pox as a child, have lifetime immunity and be done with it...... OR is it better to get the vaccine and then hope it works, but if it doesn't then get it when you're older or an adult? I just think it's called a "childhood illness" for a reason.
I've had people ask me....but what if your child got the measles? They are beginning to see an increase in measles in some areas and it's because parents are not vaccinating. They say they might see an epidemic if something is not done soon. Well...that's a legitimate concern. Doctors should make the MMR vaccine available in separate shots so that parents like me have that option. However, I have a better question for them: would you rather your child get measles or autism? That is not a choice any parent should have to make. I think the chances of your child getting measles is a lot less than having some kind of neurological damage such as autism. Did you know that the rate of autism is now 1:150?!! Now THAT is an "epidemic"!!!
This is my final thought: the same way drugs are not a one-size fits all.... vaccines are not either. It is my belief that modern technology, better hygiene, better nutrition, and other factors have made it to where we live longer and healthier lives. A long time ago, people died from the flu... now unless you are very young or very old, it's unheard of. I know it sucks to be sick...however, it also sucks to die or to get brain damage from toxins that your body can't get rid of (by the way, thimerosal is not the only bad thing in vaccines). My point is that I don't think vaccinating against certain things is worth the risk of the vaccine in the first place. Everytime you give your child a shot you sign your name to give them permission and you also agree that you won't sue the doctor if anything goes wrong. They have a compensation program....but let me tell you, you won't get any money unless your child DIES or if you have documentation that something happened. Of course, doctors aren't going to admit anything happened cause vaccines are "safe"....so you're out of luck!
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Open your mind and you will see that the answer
is usually staring you right in the face.
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Sunday, September 21, 2008
"There's More to the Story....."
I was looking back at my posts to see if there were any holes I needed to fill and I found a few. So....here is the long version of what happened with my #2 during preschool and later when he attended kindergarten in our local public school (sorry it's so long):
It was difficult finding the right preschool for our son. He was extremely bright but his language skills were delayed and therefore his social skills were also delayed. We started him off at the same preschool that our oldest went to because we trusted the people there and knew that he would be in a nurturing environment. They also had a structured program and he needed that. He received his special education services there and we saw an improvement. However, because of his delay in language, they did not advice him to move up to the next class the following year and he ended up with kids almost two years younger than he was. When his language skills improved, his special ed. representative advised us to put him in a class with kids his own age so he could learn age-appropriate social skills. Unfortunately, the class was already filled and there were no spots open. We had to find another place.
I did some research and found a Montessori School. I knew some parents who loved it and thought it might work for my #2. However, we did not have luck there. Evidently it was not run the way it was supposed to and we had some inexperienced teachers who did not know how to handle a child like mine. That was one of my biggest disappointments.
I took him out of preschool and tried to find another place. I look back on this time with much disappointment and sadness. I remember calling a particular school and talking to the director over the phone. She told me that there were spots open for his age group and that I should come by and visit the school. I went there with my #2 and my baby girl in a stroller. It didn't take long before I knew that they didn't want him there. All of a sudden she told me how the teachers aren't qualified or "trained professionals" but rather mothers who volunteer. Then she proceeded to tell me that she was so sorry but that there was a misunderstanding about the "open spots" but that she would call me if anything opened up. I remember sobbing in the front seat of my car and thinking to myself, "Why don't they want him?" I prayed that someone would see the sweet and intelligent boy I saw. Needless to say, I never heard back from them. That's okay... it was a blessing. I didn't know it then, but something better was awaiting us.
Just when I was about to give up, I heard about another place. It was a church preschool and they had a wonderful program with great teachers and ABEKA curriculum. I was already familiar with it and loved it. When I visited the school I was so excited! The classes were small in size and the teachers were so sweet. They had computers and a structured environment. However, they also let them be "kids" and that was so important to me. I immediately enrolled him and he loved it there! His teacher fell in love with him and even offered to babysit on the weekends. She told me that it didn't take long for her to figure out that he loved to help her. So...she made him her special helper and he loved that. That was a time I will never forget. He was happy and so we were happy. He was in a class with about a dozen kids. I had great expectations and hopes for kindergarten. I figured that if he could learn how to control himself in that environment then we would be set.
Well....before he started Kindergarten I was notified of his IEP meeting in the mail. I assumed that I would be meeting with his teacher and therefore would be able to give her some input on what has worked with my #2. I was wrong. They told me at the meeting that they didn't know what teacher he would have and so they just had a random kindergarten teacher attend the meeting. (I am sure it was to meet some legal requirement.) I met with a representative from the special education department and my son was discussed as if I wasn't even there. I was told that he was doing extremely well in preschool and he needed "minimal redirection" and that he was intelligent and "on target academically" so he should do well in a regular classroom. They planned on pulling him out for speech therapy and 30 minutes for academics each day. I thought that was a good plan, but I truly did not know what that meant. If I knew then what I know now, I would have insisted on waiting til AFTER school started to have his IEP so that we would know who his teacher was and have her present at the meeting. I also would have insisted that he had a "shadow" for the first few weeks to make sure that he had some consistency. If I knew then what I know now, I would have made sure he had a certain teacher. The teacher that my daughter has now would have been the perfect teacher for him. Like they say, hindsight is always 20/20.
We did all the usual things. We attended the Open House before the first day of school. We met the teacher and I thought she was nice. Her eyes looked a bit tired, but who was I to judge? I was a busy mom of three and probably looked exhausted too. My son seemed excited to start his first day and we were hopeful that things would go well. At this point I am going to write the highlights of each week. He only spent about a little over a month in school so I can remember each day so vividly as if it were just yesterday. It really left an impression on me and I am sure on him as well.
The first week of school went okay. They had a traffic light system for behavior. If you got a green light it was a good day....yellow light meant you had to be reminded a few times about behavior.....red light meant you misbehaved that day. The teacher reassured us that they would get a red light only if they repeatedly disobeyed her. She said that she usually gave them a few chances. Well...my #2 got a yellow light on Wednesday and the rest were green. We were excited. We thought that perhaps they had made a connection and things were going to work out.
The following week it wasn't so good. On Monday we got a letter from the teacher stating that she would be gone due to a family illness and she would be out of state for a couple weeks. She reassured us that the substitute was a great teacher and one she used often. So....he had a substitute the rest of the week. That week was not a good one. He got red lights and lots of notes sent home that he was not listening. On Thursday of that week I got a call from the school telling me that he had accidentally bumped his eye on the desk he was sitting in and it was bleeding. I ended up taking him to the doctor and had a butterfly bandage placed to help it heal. He was left with a scar right by his left eye. I wondered how in the world he could have hurt himself on the rubber-edged desks they have in kindergarten. It didn't make sense. Well.....he wasn't sitting on THOSE... they had placed him in his own separate desk with sharp edges because he couldn't keep his hands to himself. I was so upset! He had dropped a crayon and when he went to pick it up he ended up bumping his eye on the sharp corner of the desk. He could have lost his eye! He ended up having yet another substitute on Friday and did not have a good week in all.
The next week he had a different substitute and it was so different! He got green lights and some notes from the teacher saying how sweet he was. It was like night and day. I was so confused. Why did my child act so differently with each teacher? It wasn't until I actually met the teacher that I understood. She was a very loving and kind-hearted person. She was instinctively nurturing to those kids. I am sure that's why he loved her. I loved her and only knew her for a few minutes. :)
The last few weeks of school were a whirlwind. The teacher came back and with the stress of her family issues combined with her ignorance of my child, she became resentful and showed me in words and actions that she did not want my child in her room. He started to come home with red lights. My son had been tested in reading and "benchmarked" for the year, but she still treated him like he could not read. I decided that I needed to see what was happening and so I began to go to the school and watch her interact with my child and the other students. I witnessed her reprimanding children for touching her. I also saw her belittle a child who was there for the second time. She actually said, "Now.....Mark...you should know this by now...This is your second year in Kindergarten!" I could not believe my eyes or ears! I thought she would be in her best behavior while I was there and it was evident that she didn't care. Although, I must say that I am sure she held back a few times. I saw her expressions a few times and if I were not there I am sure she would have said other things. The other thing I noticed was that she relied on her manual waaaaay too much. Everyone knows that a child's attention span is not very long and if you are reading instead of "teaching" then you are going to lose them. She also used the same "helpers" frequently and did not give all the children an equal opportunity to say the answers. There were times when I could see that my child wanted to help but she did not let him. (Although we had discussed how much he liked to help teachers and how it helped with his behavior at his previous school.) She didn't want to be told how to "do her job" and so I had to just bite my tongue.
The one thing I have failed to mention and is very important to note here is that from the very first day of school I had tried and tried to meet with her. I wanted to discuss my child and things that worked for other teachers. I also wanted to offer her my support and to let her know that I wasn't one of these parents that thought my child was an angel. I knew that it would be a team effort and wanted to start off the year right. However, it never happened. She left town before we could get together and when she got back she showed NO interest in meeting with me.
The next thing that happened was that I got a letter sent home that I needed to meet for a Parent/Teacher conference with the special education department. I thought it would be like another IEP so I was kind of excited to do it. However, it turned out to be an ambush! I was alone without my husband and a "team" of educators proceeded to tell me how my child needed to go to a self-contained classroom at another school. They told me that it was a "wonderful program" and that it would benefit him. His teacher even told me, "my son had the teacher for speech and she's WONDERFUL!" She made a face as if to say, "trust me, this is a good idea." So, I left the meeting feeling overwhelmed and confused.
I decided to check the school out. I was so proud of myself for thinking to do this. I called them and set up a time for me to observe the class and to speak with the teacher. When I walked into the classroom it was evident to me that my child did not belong there. There were kids with diapers and some who were so severely autistic that they were drooling or were in their own little world. I talked to the teacher about my child and she was confused. She told me, "From what you tell me, it doesn't sound like this class would benefit your child. I don't think he belongs here at all. Ya'll just need to get a behavior analysis done and get someone to shadow him for a few days." I was so relieved to finally have someone on my side. It felt good to have validation. I knew deep within my heart that he didn't need to be in a self-contained classroom. He had a few behavior issues we needed to address, but he was more than able to sit and learn in a regular classroom setting.
My next step was to figure out what I should do. I called my child's school and spoke with the special education department. I set up a meeting as soon as possible and the next time I brought my husband, who is also a lawyer. I also came prepared with notes and handouts to give everyone present. I told them that the tactics being used by the teacher were not working and that something needed to be done. My child was being isolated for weeks at a time when he would misbehave and that was cruel. I asked the teacher to let him sit with his peers but she told me that he had to earn that. I tried to tell her that I understood, but why so long? She would not answer me. She tried to downplay it by saying that he was still sitting with the group and was not "isolated"... At that point I lost it!! I am usually a very mild-tempered person but let me tell you, I lost my temper. I stood up and then showed them how my child was sitting in relation to the other kids. I told them how he had hurt his eye on the edge of the table he was sitting in and that the only person who had been hurt in all of this was him and he had a scar to prove it. Then they all got a bit defensive because they saw where this was going. The last thing I remember about this meeting was the district representative saying, "I know Mrs. Miller and I am sure she used all of her resources to work with your child. I am sure she has used positive reinforcement and praise." I just glared at her and kept my mouth shut. That was a turning point for me. That was when I realized that they were on HER side. This meeting was about the TEACHER.... not my child. So....at that point I decided that my child would finish out the week and I would pull him out faster than they could blink. I was done with it and no matter what I said or did at this point, it would only escalate. She was building a case against my child.
It was difficult finding the right preschool for our son. He was extremely bright but his language skills were delayed and therefore his social skills were also delayed. We started him off at the same preschool that our oldest went to because we trusted the people there and knew that he would be in a nurturing environment. They also had a structured program and he needed that. He received his special education services there and we saw an improvement. However, because of his delay in language, they did not advice him to move up to the next class the following year and he ended up with kids almost two years younger than he was. When his language skills improved, his special ed. representative advised us to put him in a class with kids his own age so he could learn age-appropriate social skills. Unfortunately, the class was already filled and there were no spots open. We had to find another place.
I did some research and found a Montessori School. I knew some parents who loved it and thought it might work for my #2. However, we did not have luck there. Evidently it was not run the way it was supposed to and we had some inexperienced teachers who did not know how to handle a child like mine. That was one of my biggest disappointments.
I took him out of preschool and tried to find another place. I look back on this time with much disappointment and sadness. I remember calling a particular school and talking to the director over the phone. She told me that there were spots open for his age group and that I should come by and visit the school. I went there with my #2 and my baby girl in a stroller. It didn't take long before I knew that they didn't want him there. All of a sudden she told me how the teachers aren't qualified or "trained professionals" but rather mothers who volunteer. Then she proceeded to tell me that she was so sorry but that there was a misunderstanding about the "open spots" but that she would call me if anything opened up. I remember sobbing in the front seat of my car and thinking to myself, "Why don't they want him?" I prayed that someone would see the sweet and intelligent boy I saw. Needless to say, I never heard back from them. That's okay... it was a blessing. I didn't know it then, but something better was awaiting us.
Just when I was about to give up, I heard about another place. It was a church preschool and they had a wonderful program with great teachers and ABEKA curriculum. I was already familiar with it and loved it. When I visited the school I was so excited! The classes were small in size and the teachers were so sweet. They had computers and a structured environment. However, they also let them be "kids" and that was so important to me. I immediately enrolled him and he loved it there! His teacher fell in love with him and even offered to babysit on the weekends. She told me that it didn't take long for her to figure out that he loved to help her. So...she made him her special helper and he loved that. That was a time I will never forget. He was happy and so we were happy. He was in a class with about a dozen kids. I had great expectations and hopes for kindergarten. I figured that if he could learn how to control himself in that environment then we would be set.
Well....before he started Kindergarten I was notified of his IEP meeting in the mail. I assumed that I would be meeting with his teacher and therefore would be able to give her some input on what has worked with my #2. I was wrong. They told me at the meeting that they didn't know what teacher he would have and so they just had a random kindergarten teacher attend the meeting. (I am sure it was to meet some legal requirement.) I met with a representative from the special education department and my son was discussed as if I wasn't even there. I was told that he was doing extremely well in preschool and he needed "minimal redirection" and that he was intelligent and "on target academically" so he should do well in a regular classroom. They planned on pulling him out for speech therapy and 30 minutes for academics each day. I thought that was a good plan, but I truly did not know what that meant. If I knew then what I know now, I would have insisted on waiting til AFTER school started to have his IEP so that we would know who his teacher was and have her present at the meeting. I also would have insisted that he had a "shadow" for the first few weeks to make sure that he had some consistency. If I knew then what I know now, I would have made sure he had a certain teacher. The teacher that my daughter has now would have been the perfect teacher for him. Like they say, hindsight is always 20/20.
We did all the usual things. We attended the Open House before the first day of school. We met the teacher and I thought she was nice. Her eyes looked a bit tired, but who was I to judge? I was a busy mom of three and probably looked exhausted too. My son seemed excited to start his first day and we were hopeful that things would go well. At this point I am going to write the highlights of each week. He only spent about a little over a month in school so I can remember each day so vividly as if it were just yesterday. It really left an impression on me and I am sure on him as well.
The first week of school went okay. They had a traffic light system for behavior. If you got a green light it was a good day....yellow light meant you had to be reminded a few times about behavior.....red light meant you misbehaved that day. The teacher reassured us that they would get a red light only if they repeatedly disobeyed her. She said that she usually gave them a few chances. Well...my #2 got a yellow light on Wednesday and the rest were green. We were excited. We thought that perhaps they had made a connection and things were going to work out.
The following week it wasn't so good. On Monday we got a letter from the teacher stating that she would be gone due to a family illness and she would be out of state for a couple weeks. She reassured us that the substitute was a great teacher and one she used often. So....he had a substitute the rest of the week. That week was not a good one. He got red lights and lots of notes sent home that he was not listening. On Thursday of that week I got a call from the school telling me that he had accidentally bumped his eye on the desk he was sitting in and it was bleeding. I ended up taking him to the doctor and had a butterfly bandage placed to help it heal. He was left with a scar right by his left eye. I wondered how in the world he could have hurt himself on the rubber-edged desks they have in kindergarten. It didn't make sense. Well.....he wasn't sitting on THOSE... they had placed him in his own separate desk with sharp edges because he couldn't keep his hands to himself. I was so upset! He had dropped a crayon and when he went to pick it up he ended up bumping his eye on the sharp corner of the desk. He could have lost his eye! He ended up having yet another substitute on Friday and did not have a good week in all.
The next week he had a different substitute and it was so different! He got green lights and some notes from the teacher saying how sweet he was. It was like night and day. I was so confused. Why did my child act so differently with each teacher? It wasn't until I actually met the teacher that I understood. She was a very loving and kind-hearted person. She was instinctively nurturing to those kids. I am sure that's why he loved her. I loved her and only knew her for a few minutes. :)
The last few weeks of school were a whirlwind. The teacher came back and with the stress of her family issues combined with her ignorance of my child, she became resentful and showed me in words and actions that she did not want my child in her room. He started to come home with red lights. My son had been tested in reading and "benchmarked" for the year, but she still treated him like he could not read. I decided that I needed to see what was happening and so I began to go to the school and watch her interact with my child and the other students. I witnessed her reprimanding children for touching her. I also saw her belittle a child who was there for the second time. She actually said, "Now.....Mark...you should know this by now...This is your second year in Kindergarten!" I could not believe my eyes or ears! I thought she would be in her best behavior while I was there and it was evident that she didn't care. Although, I must say that I am sure she held back a few times. I saw her expressions a few times and if I were not there I am sure she would have said other things. The other thing I noticed was that she relied on her manual waaaaay too much. Everyone knows that a child's attention span is not very long and if you are reading instead of "teaching" then you are going to lose them. She also used the same "helpers" frequently and did not give all the children an equal opportunity to say the answers. There were times when I could see that my child wanted to help but she did not let him. (Although we had discussed how much he liked to help teachers and how it helped with his behavior at his previous school.) She didn't want to be told how to "do her job" and so I had to just bite my tongue.
The one thing I have failed to mention and is very important to note here is that from the very first day of school I had tried and tried to meet with her. I wanted to discuss my child and things that worked for other teachers. I also wanted to offer her my support and to let her know that I wasn't one of these parents that thought my child was an angel. I knew that it would be a team effort and wanted to start off the year right. However, it never happened. She left town before we could get together and when she got back she showed NO interest in meeting with me.
The next thing that happened was that I got a letter sent home that I needed to meet for a Parent/Teacher conference with the special education department. I thought it would be like another IEP so I was kind of excited to do it. However, it turned out to be an ambush! I was alone without my husband and a "team" of educators proceeded to tell me how my child needed to go to a self-contained classroom at another school. They told me that it was a "wonderful program" and that it would benefit him. His teacher even told me, "my son had the teacher for speech and she's WONDERFUL!" She made a face as if to say, "trust me, this is a good idea." So, I left the meeting feeling overwhelmed and confused.
I decided to check the school out. I was so proud of myself for thinking to do this. I called them and set up a time for me to observe the class and to speak with the teacher. When I walked into the classroom it was evident to me that my child did not belong there. There were kids with diapers and some who were so severely autistic that they were drooling or were in their own little world. I talked to the teacher about my child and she was confused. She told me, "From what you tell me, it doesn't sound like this class would benefit your child. I don't think he belongs here at all. Ya'll just need to get a behavior analysis done and get someone to shadow him for a few days." I was so relieved to finally have someone on my side. It felt good to have validation. I knew deep within my heart that he didn't need to be in a self-contained classroom. He had a few behavior issues we needed to address, but he was more than able to sit and learn in a regular classroom setting.
My next step was to figure out what I should do. I called my child's school and spoke with the special education department. I set up a meeting as soon as possible and the next time I brought my husband, who is also a lawyer. I also came prepared with notes and handouts to give everyone present. I told them that the tactics being used by the teacher were not working and that something needed to be done. My child was being isolated for weeks at a time when he would misbehave and that was cruel. I asked the teacher to let him sit with his peers but she told me that he had to earn that. I tried to tell her that I understood, but why so long? She would not answer me. She tried to downplay it by saying that he was still sitting with the group and was not "isolated"... At that point I lost it!! I am usually a very mild-tempered person but let me tell you, I lost my temper. I stood up and then showed them how my child was sitting in relation to the other kids. I told them how he had hurt his eye on the edge of the table he was sitting in and that the only person who had been hurt in all of this was him and he had a scar to prove it. Then they all got a bit defensive because they saw where this was going. The last thing I remember about this meeting was the district representative saying, "I know Mrs. Miller and I am sure she used all of her resources to work with your child. I am sure she has used positive reinforcement and praise." I just glared at her and kept my mouth shut. That was a turning point for me. That was when I realized that they were on HER side. This meeting was about the TEACHER.... not my child. So....at that point I decided that my child would finish out the week and I would pull him out faster than they could blink. I was done with it and no matter what I said or did at this point, it would only escalate. She was building a case against my child.
One thing I forgot to mention was that I had questioned her in the first meeting that if he was THAT bad, why did he get so many green lights? Then she got all defensive and said, "okay...I'll keep better track of what he does." The next thing I know, she brings this form to the meeting with things he did minute by minute (to prove a point I am sure) and just makes it look like he is Rosemary's Baby. Of course, it's things like: 8:05- making clicking noises..... 8:15-not following directions...8:30-Touching others....etc.....
If I would have kept a minute-by-minute list of the teacher it would have looked something like this: 8:05-showing signs of PMS...losing temper with children....8:15-not feeling like being touched today, snapping at children.....8:30-can't remember what lesson she is on today...taking about five minutes to figure it out while children have to sit quiet and still on the floor.....8:45- finally starting the lesson and belittling a child who had to repeat kindergarten (wonder if SHE was the teacher who taught him last year?).....etc......
One of my biggest regrets is that I didn't keep better notes. I wish I would have done that and then turned them into the school board. My child was not the only one being treated unkindly or unfairly. Who knows the damage she did to those children? If my child would have stayed in her class, he would not have learned how to read (she totally would help others and skip my child when it came to the reading.....while I was there!), he would have had a lower self-esteem, and his behavior would not have improved but rather decline. I often wonder what ever happened to the child who was mildly autistic and was labeled as a "pervert" in her eyes? I think SHE was the pervert thinking that way! I still don't understand how she could have children and still not understand the mind of a kindergardener. They are still so sweet and innocent. They don't think about where they place their hands. A woman's breasts and butt are just like an arm or leg.
After I started homeschooling my son, I bumped into an old classmate of his at a soccer practice. We ended up on the same team of the local YMCA. We talked a little bit about the school and teacher and then the dad asked me why I had pulled my child out of the school. I didn't want to speak negatively about anyone, especially a teacher, in public so I told him to give me a call. I gave him my number and then looked him straight in the eyes and said, "I have a LOT to tell you and some of it concerns your son." Needless to say, he called me the next day. We talked for about an hour and I told him everything I had observed and he told me things that he had observed and what had happened when he met with the teacher at a PT conference. He told me that she was not teaching the kids properly. She was using the manual too much. (That was MY observation as well.) Then he proceeded to tell me about the steps that he was going to take to ensure that his son remained in school. He wanted to fight the fight. He tried to convince me to put my son back in school and join him. However, I was so beaten at this point that I had nothing left. I wanted to place all of my energy and devotion towards educating my brilliant child.
My story has a happy ending. I feel blessed that my husband is able to provide for us so that we could afford the wonderful private school that we eventually placed him in. It has been our salvation. The school is called Churchill Academy and it's located in Montgomery, Alabama. It's a wonderful school that takes students who have autism, ADD, ADHD, or other challenges but who are very smart. They test the students and place them on level in every subject. So...you can have a child (like mine) who tests a couple grades ahead in math and reading and who is on grade level for the remainder. My son is challenged and is so happy there. The teachers are all experienced and want to be there. It definitely shows. The only negative thing about the school is the tuition. It's extremely expensive and there are a lot of people who probably can't afford it. I have two children who go there and so we basically have another house payment in tuition. However, it is totally worth the peace of mind in knowing that they are in an environment where finally they are appreciated. All the teachers love my children and tell me so. They have a positive attitude about everything there.
I will close with something that happened the first month my #2 attended first grade at Churchill. This was definitely a turning point for me. They have a point system for discipline. If they get a certain amount of points then they earn "Fun Friday" which means they will have a lot of fun that day doing anything from going to see a movie, to roller skating, or having a sock-hop. Well...he had a period of adjustment and the second or third week (can't exactly remember) he did not earn his fun Friday. I grounded him and definitely made it known that I was not happy with him. The following week I got a call from the director of the school. She is such a wonderful lady! Anyways, she began by telling me that she had heard that my son did not have a good week last week. I braced myself and just knew that the next words coming out of her mouth were going to be, "I don't know if it's going to work out." However, I was wrong!! She actually began to explain to me that they try to "use positive reinforcement at the school "and that she had heard that I was "hard on my child. " She said that "not to give up on THEM....that they had many tricks up their sleeve" and that "things would get better. " I almost cried!!! I think she knew. She knew how many times I had been beaten and disappointed. It was almost like she could read my mind. I thanked her for calling me and told her how much I appreciated them. After we hung up I pulled over and sobbed. However, this time.... unlike the previous ...they were tears of joy!
*********************************************
"Don't ever, ever, ever, give up!"-Winston Churchill
*********************************************
If I would have kept a minute-by-minute list of the teacher it would have looked something like this: 8:05-showing signs of PMS...losing temper with children....8:15-not feeling like being touched today, snapping at children.....8:30-can't remember what lesson she is on today...taking about five minutes to figure it out while children have to sit quiet and still on the floor.....8:45- finally starting the lesson and belittling a child who had to repeat kindergarten (wonder if SHE was the teacher who taught him last year?).....etc......
One of my biggest regrets is that I didn't keep better notes. I wish I would have done that and then turned them into the school board. My child was not the only one being treated unkindly or unfairly. Who knows the damage she did to those children? If my child would have stayed in her class, he would not have learned how to read (she totally would help others and skip my child when it came to the reading.....while I was there!), he would have had a lower self-esteem, and his behavior would not have improved but rather decline. I often wonder what ever happened to the child who was mildly autistic and was labeled as a "pervert" in her eyes? I think SHE was the pervert thinking that way! I still don't understand how she could have children and still not understand the mind of a kindergardener. They are still so sweet and innocent. They don't think about where they place their hands. A woman's breasts and butt are just like an arm or leg.
After I started homeschooling my son, I bumped into an old classmate of his at a soccer practice. We ended up on the same team of the local YMCA. We talked a little bit about the school and teacher and then the dad asked me why I had pulled my child out of the school. I didn't want to speak negatively about anyone, especially a teacher, in public so I told him to give me a call. I gave him my number and then looked him straight in the eyes and said, "I have a LOT to tell you and some of it concerns your son." Needless to say, he called me the next day. We talked for about an hour and I told him everything I had observed and he told me things that he had observed and what had happened when he met with the teacher at a PT conference. He told me that she was not teaching the kids properly. She was using the manual too much. (That was MY observation as well.) Then he proceeded to tell me about the steps that he was going to take to ensure that his son remained in school. He wanted to fight the fight. He tried to convince me to put my son back in school and join him. However, I was so beaten at this point that I had nothing left. I wanted to place all of my energy and devotion towards educating my brilliant child.
My story has a happy ending. I feel blessed that my husband is able to provide for us so that we could afford the wonderful private school that we eventually placed him in. It has been our salvation. The school is called Churchill Academy and it's located in Montgomery, Alabama. It's a wonderful school that takes students who have autism, ADD, ADHD, or other challenges but who are very smart. They test the students and place them on level in every subject. So...you can have a child (like mine) who tests a couple grades ahead in math and reading and who is on grade level for the remainder. My son is challenged and is so happy there. The teachers are all experienced and want to be there. It definitely shows. The only negative thing about the school is the tuition. It's extremely expensive and there are a lot of people who probably can't afford it. I have two children who go there and so we basically have another house payment in tuition. However, it is totally worth the peace of mind in knowing that they are in an environment where finally they are appreciated. All the teachers love my children and tell me so. They have a positive attitude about everything there.
I will close with something that happened the first month my #2 attended first grade at Churchill. This was definitely a turning point for me. They have a point system for discipline. If they get a certain amount of points then they earn "Fun Friday" which means they will have a lot of fun that day doing anything from going to see a movie, to roller skating, or having a sock-hop. Well...he had a period of adjustment and the second or third week (can't exactly remember) he did not earn his fun Friday. I grounded him and definitely made it known that I was not happy with him. The following week I got a call from the director of the school. She is such a wonderful lady! Anyways, she began by telling me that she had heard that my son did not have a good week last week. I braced myself and just knew that the next words coming out of her mouth were going to be, "I don't know if it's going to work out." However, I was wrong!! She actually began to explain to me that they try to "use positive reinforcement at the school "and that she had heard that I was "hard on my child. " She said that "not to give up on THEM....that they had many tricks up their sleeve" and that "things would get better. " I almost cried!!! I think she knew. She knew how many times I had been beaten and disappointed. It was almost like she could read my mind. I thanked her for calling me and told her how much I appreciated them. After we hung up I pulled over and sobbed. However, this time.... unlike the previous ...they were tears of joy!
*********************************************
"Don't ever, ever, ever, give up!"-Winston Churchill
*********************************************
Saturday, September 20, 2008
Heaven's Little Angels
In the LDS religion we believe in a premortal existence. That means that we existed as spirit children of our Heavenly Father before we came to earth and gained a mortal body. That is why we often refer to one another as Brother and Sister....because we truly are sons and daughters of God.
Today I had a very interesting conversation with one of my friends from church. She is pursuing a master's degree in Special Education. She told me how she loves working with children who have special challenges because there is such an "innocence and sincere heart" when speaking to them. I told her about my experiences with the special education department at my local school and how I have had the opportunity to volunteer and help them. I was able to help in the Pal's Class where they have children with Down's Syndrome and severe autism. They are in there until they begin fourth grade and then they go on to another classroom. Let me tell you.....they are the sweetest and most loving kids you will ever meet. I feel it a privilege to know them. They have their challenges that's for sure, but their smiles and their sweet spirits make it all worthwhile.
I often wonder what it would be like for a parent to know that their sweet baby is going to be born with such a handicap? Is it better to know or does it hurt less if it happens gradually? I am sure there has to be a roller coaster of emotions. There is probably a period of grief that a parent experiences in knowing that all their dreams and expectations they had for their child would have to change. There might be a period of denial. Then....there is the transformation and a change occurs. It's not with the child, but with the parent. I have seen it happen with friends and have observed it in others. It becomes evident that these children have a greater purpose than anyone can comprehend.
Many have asked the age old question: Why would a loving and kind Heavenly Father bring these spirits to earth and give them such a heavy burden to bear? The answer is that their burden is only temporal. Spiritually they are blessed. In our church, if a child is born with such a handicap they don't even have to be baptized. They are so innocent in the eyes of God that they cannot sin. They are special spirits sent from above to teach all of US a lesson. They had progressed so much in the premortal existence that all they needed was to obtain a body. Their lives on earth do have meaning AND purpose. If they COULD talk, they would probably tell us, "don't feel sorry for me....but love me...this life is but a season compared to eternity and we WILL return back to our Heavenly Father one day and see one another for who we truly are."
When I look into the eyes of these precious angels in the Pal's Class I can see the innocence and love in their eyes. They uplift and encourage one another. When one is praised about good behavior, for example, they ALL light up and show their excitement. They don't think twice about showing their love either. I get tons of hugs and you can't help but to love them back. Another thing I have noticed is how special the PARENTS are! The special education teacher made a comment one day that I will never forget. She said that, "it's not by chance that these kids were born into these families." I believe that too.
I am thankful for the trials that I have been given. They have helped ME to progress and grow. I appreciate what is important and I try not to stress about the small stuff. I always tell myself that God will only give me what I can handle. What doesn't kill us only makes us stronger, right? I am thankful for the children that I have been blessed with. It breaks my heart whenever I speak to my friends who cannot conceive and who I know would make absolutely wonderful parents. I always feel a greater appreciation for motherhood. It is a divine calling and one that I don't take lightly.
No matter what your trials are don't lose sight of the greater picture. You are instruments by which Heavenly Father takes care of his little ones. It's your job to teach them and guide them. Religion is very important and I know it's because of my faith that I have been able to endure and rejoice. It's no easy task, but the blessings are overwhelming. When I tuck my babies in at night (yes...even my almost twelve year-old) I cherish the moment and I make sure to tell them each individually how much they are loved. If I've done my job right, their last thoughts as they drift into sleep will be, "I am loved."
***********************************************
"The best and most beautiful things in the world
cannot be seen or even touched. They must
be felt within the heart." - Helen Keller
***********************************************
Today I had a very interesting conversation with one of my friends from church. She is pursuing a master's degree in Special Education. She told me how she loves working with children who have special challenges because there is such an "innocence and sincere heart" when speaking to them. I told her about my experiences with the special education department at my local school and how I have had the opportunity to volunteer and help them. I was able to help in the Pal's Class where they have children with Down's Syndrome and severe autism. They are in there until they begin fourth grade and then they go on to another classroom. Let me tell you.....they are the sweetest and most loving kids you will ever meet. I feel it a privilege to know them. They have their challenges that's for sure, but their smiles and their sweet spirits make it all worthwhile.
I often wonder what it would be like for a parent to know that their sweet baby is going to be born with such a handicap? Is it better to know or does it hurt less if it happens gradually? I am sure there has to be a roller coaster of emotions. There is probably a period of grief that a parent experiences in knowing that all their dreams and expectations they had for their child would have to change. There might be a period of denial. Then....there is the transformation and a change occurs. It's not with the child, but with the parent. I have seen it happen with friends and have observed it in others. It becomes evident that these children have a greater purpose than anyone can comprehend.
Many have asked the age old question: Why would a loving and kind Heavenly Father bring these spirits to earth and give them such a heavy burden to bear? The answer is that their burden is only temporal. Spiritually they are blessed. In our church, if a child is born with such a handicap they don't even have to be baptized. They are so innocent in the eyes of God that they cannot sin. They are special spirits sent from above to teach all of US a lesson. They had progressed so much in the premortal existence that all they needed was to obtain a body. Their lives on earth do have meaning AND purpose. If they COULD talk, they would probably tell us, "don't feel sorry for me....but love me...this life is but a season compared to eternity and we WILL return back to our Heavenly Father one day and see one another for who we truly are."
When I look into the eyes of these precious angels in the Pal's Class I can see the innocence and love in their eyes. They uplift and encourage one another. When one is praised about good behavior, for example, they ALL light up and show their excitement. They don't think twice about showing their love either. I get tons of hugs and you can't help but to love them back. Another thing I have noticed is how special the PARENTS are! The special education teacher made a comment one day that I will never forget. She said that, "it's not by chance that these kids were born into these families." I believe that too.
I am thankful for the trials that I have been given. They have helped ME to progress and grow. I appreciate what is important and I try not to stress about the small stuff. I always tell myself that God will only give me what I can handle. What doesn't kill us only makes us stronger, right? I am thankful for the children that I have been blessed with. It breaks my heart whenever I speak to my friends who cannot conceive and who I know would make absolutely wonderful parents. I always feel a greater appreciation for motherhood. It is a divine calling and one that I don't take lightly.
No matter what your trials are don't lose sight of the greater picture. You are instruments by which Heavenly Father takes care of his little ones. It's your job to teach them and guide them. Religion is very important and I know it's because of my faith that I have been able to endure and rejoice. It's no easy task, but the blessings are overwhelming. When I tuck my babies in at night (yes...even my almost twelve year-old) I cherish the moment and I make sure to tell them each individually how much they are loved. If I've done my job right, their last thoughts as they drift into sleep will be, "I am loved."
***********************************************
"The best and most beautiful things in the world
cannot be seen or even touched. They must
be felt within the heart." - Helen Keller
***********************************************
Thursday, September 18, 2008
Special Children in a Public School System
I am tired of hearing how teachers don't have the time dealing with "these" kids. It breaks my heart every time I see them glaring at that ONE child that seems to have a hard time sitting still. Even though I definitely can empathize with their stress and frustration, there is no excuse for the way that some teachers choose to deal with it.
I have a great respect for teachers. I think that it takes a very special kind of person to do it well. You have to have a lot of patience, a tender heart, provide a structured environment, a lot of love to give, and lastly you need understanding. When my first child went to kindergarden I was excited and apprehensive at the same time. I knew it wouldn't be "smooth sailing" and I was anxious about the first week of school. I was praying that he would end up with a good teacher. In all, it turned out to be a good year but it wasn't without struggles and a lot of work. It didn't take me long to figure out that boys are treated differently from girls in school. It's almost like teachers expect boys to misbehave and so they live up to their expectations. Girls are usually the ones that can sit still for long periods of time and enjoy seat work that usually means coloring and crafts. Boys would much rather go outside and play. They also interact differently and you can see that when they are in line and the boys are wrestling with one another while you will often see the girls holding hands.
I have often wondered why are boys more likely to be diagnosed with ADHD? I believe boys outnumber the girls by three times! Schools are not designed for the kids who think outside the box or who have high energy levels. They are not a place where children are encouraged to socialize with one another. They are often asked to be quiet (even during lunch) and they have cut back on recess so much that they only get about 30 minutes (on a good day) of outside play. This means that they spend most of the day indoors. THEN....when they get home they have homework and that leaves very little time for playing outside and being a kid. IF they have any extracurricular activities who knows what time they finally get to bed. Some kids don't get enough sleep. That is a very vicious cycle. For a "normal" child this can be so stressful.....for a "special" child, this doesn't last very long before the parent can't handle it anymore. I see that a lot!
Are public schools prepared for children with Autism or PDD? I don't think so. My feeling is that there is the best of intentions and the people who work in special education are among the sweetest and most dedicated teachers. However, where is their support? I often hear their frustration and their cries for help. I even had a teacher cry on my shoulder because she felt like the school had failed me. You see....with my #2 we had to pull him out and homeschool him. We tried for about a month at our public school and all they could offer me was to place him in a "self-contained" classroom at another school across town. He is high functioning and extremely bright. The only issue we had was his behavior (things such as making "clicking noises" or invading personal space). However, when he had someone with him he would behave perfectly with minimal redirection. I was smart enough to go check out the school they were talking about. Boy.....was I in for a surprise! I will never forget the feeling I got when I walked through the doors of the classroom and I saw some kids were still in diapers, others were drooling, and others who were in "their own little world". I talked with the teacher (who was wonderful by the way) but after I explained my situation she didn't think he belonged there. I was so relieved to finally have someone on my side!
I went back to the school and had another meeting with the teacher, vice-principal, Special Education people, and District Leader. I asked them who was the one who had suggested that my child go to that school. They would not tell me. Their answer was, "well...we all discussed it." I knew exactly who had suggested it.... it was the teacher. She had 21 students in her class and she was overwhelmed. She didn't have the time to "deal" with my child nor the patience. She had her own problems. She told me, "I have twenty others to teach." I told her, "I have only one #2 and he's my baby." She chose to punish him a week at a time and that was unacceptable. How could he remember why he was being isolated after one, two, or even three days?! Now that I know he has short-term memory issues that REALLY upsets me!! He was basically tortured during those weeks. I just wish I could go back in time. I really do!!
I immediately got the paperwork started for the umbrella to homeschool my #2 and I let him finish out the week. I wrote a letter to the principal explaining why I was pulling my child out and I never looked back. I was tired of playing the game. The system is broken and I wasn't going to use my child to fix it. Many people told me that I should not have pulled him out because that's what they wanted. Well....I must say that I feel fortunate that I could. There are so many people who have no choice. I spoke with another parent during a soccer practice (who I later learned was a teacher) whose child was also in my #2's class and we discussed the teacher. He was having issues with her as well. His son was mildly autistic and he would sometimes poke the teacher at eye-level, which unfortunately happened to be her butt, to get her attention. (I witnessed this during one of my visits.) The teacher had a meeting and told the parents that he was being "inappropriate" by touching her. She made it sound like it was of a sexual nature. I was blown away! After speaking to him and all the things he confided in me, I know I did the right thing.
I used the Abeka curriculum with my son and taught him how to read in about a month. I learned that he had a gift for math and we were able to develop that. We used the local YMCA for sports and we put him on a soccer team. We also tried out gymnastics and he was able to make lots of friends and get the social skills he needed. I also gave him piano lessons and learned he had a gift for the piano as well. Needless to say, I saw him blossom before my eyes. We had the best year and when it was over, I gave him a big graduation party to celebrate his achievements.
There is so much more to the story, but I tried to post the highlights. My point is this: don't let your pride get in the way of your decisions. Sometimes fighting to "make a point" is not necessarily the best answer. Try to weigh your options. I understand that homeschooling is not for everyone. Not everyone can afford private school either. If you have the time, observe the classroom. I did that and found out the teacher was snapping at the kids for touching her and she did other things that I found inappropriate. I observed her for a couple weeks. I was shocked at the things I saw. (Like I said, there is lots more to this story.) It's amazing what you will do once the "mama bear" come out in you. I actually surprised myself!
I wish I knew what the answer was. I know every case is different. I have a friend that fought the system and was able to get her child the help he needed. I have another friend who is working with her daughter's school as a substitute teacher to make sure that she doesn't "slip through the cracks". I just know one thing, and that is that the public school system is not designed for all kids. I just hope and pray that someday changes are made and that this vicious cycle doesn't have to be a "norm" anymore!
***********************************************
Moms are as sweet as honey with their tender care,
but touch their child and watch out for the Mama Bear!!
***********************************************
I have a great respect for teachers. I think that it takes a very special kind of person to do it well. You have to have a lot of patience, a tender heart, provide a structured environment, a lot of love to give, and lastly you need understanding. When my first child went to kindergarden I was excited and apprehensive at the same time. I knew it wouldn't be "smooth sailing" and I was anxious about the first week of school. I was praying that he would end up with a good teacher. In all, it turned out to be a good year but it wasn't without struggles and a lot of work. It didn't take me long to figure out that boys are treated differently from girls in school. It's almost like teachers expect boys to misbehave and so they live up to their expectations. Girls are usually the ones that can sit still for long periods of time and enjoy seat work that usually means coloring and crafts. Boys would much rather go outside and play. They also interact differently and you can see that when they are in line and the boys are wrestling with one another while you will often see the girls holding hands.
I have often wondered why are boys more likely to be diagnosed with ADHD? I believe boys outnumber the girls by three times! Schools are not designed for the kids who think outside the box or who have high energy levels. They are not a place where children are encouraged to socialize with one another. They are often asked to be quiet (even during lunch) and they have cut back on recess so much that they only get about 30 minutes (on a good day) of outside play. This means that they spend most of the day indoors. THEN....when they get home they have homework and that leaves very little time for playing outside and being a kid. IF they have any extracurricular activities who knows what time they finally get to bed. Some kids don't get enough sleep. That is a very vicious cycle. For a "normal" child this can be so stressful.....for a "special" child, this doesn't last very long before the parent can't handle it anymore. I see that a lot!
Are public schools prepared for children with Autism or PDD? I don't think so. My feeling is that there is the best of intentions and the people who work in special education are among the sweetest and most dedicated teachers. However, where is their support? I often hear their frustration and their cries for help. I even had a teacher cry on my shoulder because she felt like the school had failed me. You see....with my #2 we had to pull him out and homeschool him. We tried for about a month at our public school and all they could offer me was to place him in a "self-contained" classroom at another school across town. He is high functioning and extremely bright. The only issue we had was his behavior (things such as making "clicking noises" or invading personal space). However, when he had someone with him he would behave perfectly with minimal redirection. I was smart enough to go check out the school they were talking about. Boy.....was I in for a surprise! I will never forget the feeling I got when I walked through the doors of the classroom and I saw some kids were still in diapers, others were drooling, and others who were in "their own little world". I talked with the teacher (who was wonderful by the way) but after I explained my situation she didn't think he belonged there. I was so relieved to finally have someone on my side!
I went back to the school and had another meeting with the teacher, vice-principal, Special Education people, and District Leader. I asked them who was the one who had suggested that my child go to that school. They would not tell me. Their answer was, "well...we all discussed it." I knew exactly who had suggested it.... it was the teacher. She had 21 students in her class and she was overwhelmed. She didn't have the time to "deal" with my child nor the patience. She had her own problems. She told me, "I have twenty others to teach." I told her, "I have only one #2 and he's my baby." She chose to punish him a week at a time and that was unacceptable. How could he remember why he was being isolated after one, two, or even three days?! Now that I know he has short-term memory issues that REALLY upsets me!! He was basically tortured during those weeks. I just wish I could go back in time. I really do!!
I immediately got the paperwork started for the umbrella to homeschool my #2 and I let him finish out the week. I wrote a letter to the principal explaining why I was pulling my child out and I never looked back. I was tired of playing the game. The system is broken and I wasn't going to use my child to fix it. Many people told me that I should not have pulled him out because that's what they wanted. Well....I must say that I feel fortunate that I could. There are so many people who have no choice. I spoke with another parent during a soccer practice (who I later learned was a teacher) whose child was also in my #2's class and we discussed the teacher. He was having issues with her as well. His son was mildly autistic and he would sometimes poke the teacher at eye-level, which unfortunately happened to be her butt, to get her attention. (I witnessed this during one of my visits.) The teacher had a meeting and told the parents that he was being "inappropriate" by touching her. She made it sound like it was of a sexual nature. I was blown away! After speaking to him and all the things he confided in me, I know I did the right thing.
I used the Abeka curriculum with my son and taught him how to read in about a month. I learned that he had a gift for math and we were able to develop that. We used the local YMCA for sports and we put him on a soccer team. We also tried out gymnastics and he was able to make lots of friends and get the social skills he needed. I also gave him piano lessons and learned he had a gift for the piano as well. Needless to say, I saw him blossom before my eyes. We had the best year and when it was over, I gave him a big graduation party to celebrate his achievements.
There is so much more to the story, but I tried to post the highlights. My point is this: don't let your pride get in the way of your decisions. Sometimes fighting to "make a point" is not necessarily the best answer. Try to weigh your options. I understand that homeschooling is not for everyone. Not everyone can afford private school either. If you have the time, observe the classroom. I did that and found out the teacher was snapping at the kids for touching her and she did other things that I found inappropriate. I observed her for a couple weeks. I was shocked at the things I saw. (Like I said, there is lots more to this story.) It's amazing what you will do once the "mama bear" come out in you. I actually surprised myself!
I wish I knew what the answer was. I know every case is different. I have a friend that fought the system and was able to get her child the help he needed. I have another friend who is working with her daughter's school as a substitute teacher to make sure that she doesn't "slip through the cracks". I just know one thing, and that is that the public school system is not designed for all kids. I just hope and pray that someday changes are made and that this vicious cycle doesn't have to be a "norm" anymore!
***********************************************
Moms are as sweet as honey with their tender care,
but touch their child and watch out for the Mama Bear!!
***********************************************
Tuesday, September 16, 2008
Being Your Child's Advocate
I have great respect for doctors. My great-grandfather was a doctor, my great-Uncle was a doctor, and I grew up around them so I know how much dedication it takes and all of that. However, it seems like the profession is changing. Doctors have more patients than they can handle. They also are enticed by pharmaceutical companies with "gifts" and incentives. Also, finding a "family doctor" is hard these days. There are hundreds of specialists and you have to get referrals from the pediatrician or general practioner in order for insurance to cover it. Those are some general observations I have made.
Now....what do I mean when I say you must be "your child's advocate" and why do I feel the need to post this? After going through what I have gone through I am determined to make sure that it doesn't happen to anyone else. I am breaking it down into five rules and I will try to be as brief as possible in explaining each one:
Rule #1: Doctors DO make mistakes. Luckily, I have a medical background and so I know a little bit about drugs and bugs. :) I worked in Chemistry and Microbiology in the laboratory for five years. That means I know a little thing or two about laboratory testing too. When my daughter started to see different doctors I made sure to keep copies of her laboratory testing and made a binder to hold it in. I also started to question doctors when they wanted to repeat testing. It broke my heart everytime she had to get her blood drawn. Not only that, but the insurance company started to give me a hard time about it as well. Make sure that you keep track of what tests they do and ask them why it has to be done. Once I asked the liver specialist why they were repeating a certain test and he came back saying that he didn't realize it had already been done. He went into the computer and was able to obtain it. Don't be afraid to speak up about it. It is your right to know. If the doctor gets perturbed then perhaps you need to find another doctor.
Rule #2: Follow your gut. It is my belief that mothers have been blessed with a special gift. You can call it "motherly instict" or "divine nature". Don't ignore it. There has been soooo many times when my children have been sick and the doctors did not believe me. However, I persisted and lo and behold something WAS wrong. The best example is with my daughter who was finally diagnosed with Wilson's Disease. She had all these abnormal values in her laboratory testing and although she acted and seemed healthy I knew that there was something wrong. I am so glad that I persisted. If I would have listened to the doctors who knows what the outcome would have been. We would have continued to feed her high copper foods and her liver enzymes would have continued to increase. I would have ended up with a very sick child.
Rule #3: There are alternatives to medicine. There are some doctors and parents who don't think twice about administering a drug to a child. Just like you should be careful about what they eat, you should also be cautious about the drugs you give them. Do your research. There are some drugs that are recalled or even have terrible side-effects. I have already posted the information on the ADD drugs my #1 took and all the trouble we had. Also, I think it's important to note that there are many herbal remedies out there and they work! My youngest had really bad teething and my friend gave me some chamomile. It was in liquid form in these plastic capsules. She said she kept them in her purse. Let me tell you......it worked!! I think it is possible to combine traditional medicine and alternative medicine. I do it and it works for me.
Rule #4: Stand firm in what you believe. Right now I believe that vaccines injured three of my four children. I think it's because they were given too many too soon. I have done my research and I don't feel comfortable with the schedule that the doctor wants to follow. I am following a different schedule that I feel good about with my baby. So far he is doing great and he is the healthiest of all my children. There is an epidemic of autism in the world right now. I am trying to educate others (including the doctors) about my experiences. I am hoping that one day someone will listen. I just wish that they would have enough of an open mind to really listen to me. They always just get defensive when I try to talk to them about it and then proceed to use scare tactics to get me to give my baby the 6+ vaccines that are due that day. I also have mothers who feel threatened for some reason. I guess they feel like I am offending them when I say that vaccines can injure some kids. I don't mean to insult anyone.... I just try to warn others of what happened to me. It's not until something hits home that you really take notice. Know what I mean? So....whatever it is that YOU believe, stand firm in your decision. If you know that your child wouldn't benefit then speak up. If you see that they are not taking things as proactive as you'd like then speak up!
Rule #5: Do your research. There are so many resources. You have the library, book stores, the internet, and physicians. Read all that you can. Ask lots of questions. Find out all you can about doctors in your area. Look them up online and find out their history. It doesn't hurt to get a second opinion if you question something. Most people spend days of research and looking when choosing a car. The same care should be taken when choosing a doctor. The best place you can go is usually a Children's Hospital. If there is one in your area then you should consider it. They usually have specialists in many areas and are experienced pediatricians. My daughter has a TEAM of doctors who are caring for her. It is also a great environment and if your child has to spend a lot of time there then you want them to be comfortable.
My final thought is this....don't be afraid to speak up if you don't understand something or if you disagree. The treatment of your child is a team effort. You and your doctor should have the same goal: the well being of your child. However, in the end you know your child better than anyone, and a doctorate is no match for a mother's love.
***********************************
A mother's love has no boundaries.
***********************************
Now....what do I mean when I say you must be "your child's advocate" and why do I feel the need to post this? After going through what I have gone through I am determined to make sure that it doesn't happen to anyone else. I am breaking it down into five rules and I will try to be as brief as possible in explaining each one:
Rule #1: Doctors DO make mistakes. Luckily, I have a medical background and so I know a little bit about drugs and bugs. :) I worked in Chemistry and Microbiology in the laboratory for five years. That means I know a little thing or two about laboratory testing too. When my daughter started to see different doctors I made sure to keep copies of her laboratory testing and made a binder to hold it in. I also started to question doctors when they wanted to repeat testing. It broke my heart everytime she had to get her blood drawn. Not only that, but the insurance company started to give me a hard time about it as well. Make sure that you keep track of what tests they do and ask them why it has to be done. Once I asked the liver specialist why they were repeating a certain test and he came back saying that he didn't realize it had already been done. He went into the computer and was able to obtain it. Don't be afraid to speak up about it. It is your right to know. If the doctor gets perturbed then perhaps you need to find another doctor.
Rule #2: Follow your gut. It is my belief that mothers have been blessed with a special gift. You can call it "motherly instict" or "divine nature". Don't ignore it. There has been soooo many times when my children have been sick and the doctors did not believe me. However, I persisted and lo and behold something WAS wrong. The best example is with my daughter who was finally diagnosed with Wilson's Disease. She had all these abnormal values in her laboratory testing and although she acted and seemed healthy I knew that there was something wrong. I am so glad that I persisted. If I would have listened to the doctors who knows what the outcome would have been. We would have continued to feed her high copper foods and her liver enzymes would have continued to increase. I would have ended up with a very sick child.
Rule #3: There are alternatives to medicine. There are some doctors and parents who don't think twice about administering a drug to a child. Just like you should be careful about what they eat, you should also be cautious about the drugs you give them. Do your research. There are some drugs that are recalled or even have terrible side-effects. I have already posted the information on the ADD drugs my #1 took and all the trouble we had. Also, I think it's important to note that there are many herbal remedies out there and they work! My youngest had really bad teething and my friend gave me some chamomile. It was in liquid form in these plastic capsules. She said she kept them in her purse. Let me tell you......it worked!! I think it is possible to combine traditional medicine and alternative medicine. I do it and it works for me.
Rule #4: Stand firm in what you believe. Right now I believe that vaccines injured three of my four children. I think it's because they were given too many too soon. I have done my research and I don't feel comfortable with the schedule that the doctor wants to follow. I am following a different schedule that I feel good about with my baby. So far he is doing great and he is the healthiest of all my children. There is an epidemic of autism in the world right now. I am trying to educate others (including the doctors) about my experiences. I am hoping that one day someone will listen. I just wish that they would have enough of an open mind to really listen to me. They always just get defensive when I try to talk to them about it and then proceed to use scare tactics to get me to give my baby the 6+ vaccines that are due that day. I also have mothers who feel threatened for some reason. I guess they feel like I am offending them when I say that vaccines can injure some kids. I don't mean to insult anyone.... I just try to warn others of what happened to me. It's not until something hits home that you really take notice. Know what I mean? So....whatever it is that YOU believe, stand firm in your decision. If you know that your child wouldn't benefit then speak up. If you see that they are not taking things as proactive as you'd like then speak up!
Rule #5: Do your research. There are so many resources. You have the library, book stores, the internet, and physicians. Read all that you can. Ask lots of questions. Find out all you can about doctors in your area. Look them up online and find out their history. It doesn't hurt to get a second opinion if you question something. Most people spend days of research and looking when choosing a car. The same care should be taken when choosing a doctor. The best place you can go is usually a Children's Hospital. If there is one in your area then you should consider it. They usually have specialists in many areas and are experienced pediatricians. My daughter has a TEAM of doctors who are caring for her. It is also a great environment and if your child has to spend a lot of time there then you want them to be comfortable.
My final thought is this....don't be afraid to speak up if you don't understand something or if you disagree. The treatment of your child is a team effort. You and your doctor should have the same goal: the well being of your child. However, in the end you know your child better than anyone, and a doctorate is no match for a mother's love.
***********************************
A mother's love has no boundaries.
***********************************
Monday, September 15, 2008
The ADHD Answer.......NOT!
One of my crusades is also in educating parents about ADHD and what options they have. The only option I was given for my #1 was medicine!! That was it!! They talked a bit about behavior modification but they didn't expand on it. They also warned me that it would take months and possibly a year to figure out how much dosage to give, AND that it could change as he got older. Little did I know.....that was only the beginning.
Let me begin with what I like to call: the "Guinea Pig" treatment. Your child will begin a course of treatment that will entail taking some kind of stimulant such as Ritalin, or Adderall, or now Concerta. IF your child suffers from depression the doctor might even suggest antidepressants. So...then you will begin by taking either the lowest dosage possible and then going up from there or in some cases taking somewhere in the middle and then lowering it. It takes about a month or so before you know if it is working and then you will probably have to adjust it a few times after that. If you have side-effects (which we did) then you will have to change drugs and start ALL over again! Yep....it's a vicious cycle and one that I would not wish on my worst enemy.
I think it's important to let you all know the side-effects that WE encountered. My child was definitely full of energy and loved life. He was extremely smart and at times he was a bit strong-willed. The main reason we had him diagnosed was because when he was three his preschool teachers complained about his inability to sit still and focus. We ignored them at the time because we felt that he was too young for them to expect him to sit still for 30 minutes! However, we decided to look further when he went to Kindergarden and his teacher complained about his inability to sit still for long periods of time and mentioned he had attention deficit issues. We took their advice and got him tested. We were told he had a mild case of ADHD and so we began with Ritalin. Let me tell you, he was a totally different child! He was definitely calmer and seemed to be able to focus better. We saw his handwriting improve dramatically and his art ability was enhanced on the drug. HOWEVER, he also began to exhibit terrible mood swings and lost his appetite. He was a rather skinny kid and so he didn't have a lot of weight to spare. He also was not happy. He seemed to be in a "zombie" state and it just wasn't him. At the time, he couldn't communicate very well and so we couldn't talk about it. He just didn't look or act very happy. We started by lowering his dose and changed to a time-release capsule to make sure he got a steady stream of drug. None of it seemed to help. Then we changed to Adderall. At first I thought this was going to be the "magic bullet". However, it had even worse side-effects. Eventually, he became high strung and would get his feelings hurt very easily. He would cry at the drop of a hat. I felt like he was in a state of depression. He did not eat very well and so continued to lose more weight. His first grade teacher actually told me that she felt he was being "paranoid" about things happening at school. He felt like people were "out to get him" or "talking about him". If that weren't enough.....I noticed one day that he had these dots on his back and realized it was his backbone rubbing against the bed at night and causing bed sores! That was definitely it for me.
Well.....he finished out the first grade in a private school (with medicine, per teacher request). I decided to do a little research on ADHD. I discovered the INTERNET!! It's my new best friend. I just love Google! I also purchased a few books and the one I would totally recommend to people is The ADD Answer By: Frank Lawlis. It's an AWESOME book!! It explains ADD in a way I had never understood before. It also shows that there ARE ways to test for it medically and not just a questionnaire. That is just too biased in my opinion. The book also talks about medicine and how it works in the brain. It also warns that medicine should NOT be used as a LONG-TERM treatment. It also gives you an awesome resource of information concerning diet and how that alone can treat some kids. I never heard anything about that from doctors before. As a matter of fact, after reading the book I realized that my child's diet consisted mainly of carbs. I started to be more conscious about the food he ate and it made the world of difference!!! In the morning, I made him eggs instead of the sweet cereal or poptarts that he just loved. I saw a great improvement in his ability to focus. It was amazing!! Red dye was another trigger. I didn't realize how it affected him!
After much thought and prayer, I decided to homeschool my #1. It was the best decision I could have made. I just didn't want him to go to school during this transitional time for us. I had decided that I was not going to give him any more medicine and I knew if I put him back at school that they would pressure me into doing it. While I homeschooled I was able to focus on his behavior and teach him how to ignore distractions. I found out that the main reason he could not sit still in his seat was because he was bored! He would finish his work and then would get in trouble because he would want to speak to his friends. Also, he was so skinny that I am sure it hurt for him to sit still for too long. (That was something that Frank Lawlis actually experienced and talks about in his book.) There were other things too that I found out about my child. I found out that he would actually listen while doing some of the things the teachers were complaining about. In other words, it looked like he wasn't listening, but he was! There are different kinds of learners and obviously he is not a visual learner at all. He actually did better when his hands were busy. I compare it to the adults who will doodle on a sheet of paper while talking on the phone. It's basically the same thing. He was so smart that he had figured out a way of calming himself down. Unfortunately, it looked like he was not paying attention to the teachers.
To make a loooooong story short..... we were able to complete 2nd and 3rd grade in one year! He was so easy to teach and he was like a sponge absorbing all of the information faster than I could give it to him. I made sure to test him and give him plenty of seat work so that he would be ready for school. When it came time for him to go back to public school, he started in the 4th grade and finished with flying colors without ANY medicine!! He had the best teacher who was strict but very loving. It made the world of difference and I was so proud of him!
I hope this story gives you all the hope of what can be achieved. The moral to my story is to get as educated as you can about your child's condition. If you have a diagnosis then find out what that means. Read books and talk to other parents. Unfortunately, I didn't have any parents to talk to and so I was basically alone in all of this. I just wish I could have had some kind of support or someone to talk to that could relate. It's totally different when you have been down this road before. PLEASE.....consider your options. My wish is that I can spare others from what I went through. It's not fun and it's not worth it. If your child has a mild case of ADD/ADHD then consider changing the diet or making sure he gets enough sleep....limit computer and television time.....Also, I have learned that consistent and loving discipline does wonders! Try it....what do you have to lose?
**********************************************
A child's loving smile is the best medicine in the world.
**********************************************
Let me begin with what I like to call: the "Guinea Pig" treatment. Your child will begin a course of treatment that will entail taking some kind of stimulant such as Ritalin, or Adderall, or now Concerta. IF your child suffers from depression the doctor might even suggest antidepressants. So...then you will begin by taking either the lowest dosage possible and then going up from there or in some cases taking somewhere in the middle and then lowering it. It takes about a month or so before you know if it is working and then you will probably have to adjust it a few times after that. If you have side-effects (which we did) then you will have to change drugs and start ALL over again! Yep....it's a vicious cycle and one that I would not wish on my worst enemy.
I think it's important to let you all know the side-effects that WE encountered. My child was definitely full of energy and loved life. He was extremely smart and at times he was a bit strong-willed. The main reason we had him diagnosed was because when he was three his preschool teachers complained about his inability to sit still and focus. We ignored them at the time because we felt that he was too young for them to expect him to sit still for 30 minutes! However, we decided to look further when he went to Kindergarden and his teacher complained about his inability to sit still for long periods of time and mentioned he had attention deficit issues. We took their advice and got him tested. We were told he had a mild case of ADHD and so we began with Ritalin. Let me tell you, he was a totally different child! He was definitely calmer and seemed to be able to focus better. We saw his handwriting improve dramatically and his art ability was enhanced on the drug. HOWEVER, he also began to exhibit terrible mood swings and lost his appetite. He was a rather skinny kid and so he didn't have a lot of weight to spare. He also was not happy. He seemed to be in a "zombie" state and it just wasn't him. At the time, he couldn't communicate very well and so we couldn't talk about it. He just didn't look or act very happy. We started by lowering his dose and changed to a time-release capsule to make sure he got a steady stream of drug. None of it seemed to help. Then we changed to Adderall. At first I thought this was going to be the "magic bullet". However, it had even worse side-effects. Eventually, he became high strung and would get his feelings hurt very easily. He would cry at the drop of a hat. I felt like he was in a state of depression. He did not eat very well and so continued to lose more weight. His first grade teacher actually told me that she felt he was being "paranoid" about things happening at school. He felt like people were "out to get him" or "talking about him". If that weren't enough.....I noticed one day that he had these dots on his back and realized it was his backbone rubbing against the bed at night and causing bed sores! That was definitely it for me.
Well.....he finished out the first grade in a private school (with medicine, per teacher request). I decided to do a little research on ADHD. I discovered the INTERNET!! It's my new best friend. I just love Google! I also purchased a few books and the one I would totally recommend to people is The ADD Answer By: Frank Lawlis. It's an AWESOME book!! It explains ADD in a way I had never understood before. It also shows that there ARE ways to test for it medically and not just a questionnaire. That is just too biased in my opinion. The book also talks about medicine and how it works in the brain. It also warns that medicine should NOT be used as a LONG-TERM treatment. It also gives you an awesome resource of information concerning diet and how that alone can treat some kids. I never heard anything about that from doctors before. As a matter of fact, after reading the book I realized that my child's diet consisted mainly of carbs. I started to be more conscious about the food he ate and it made the world of difference!!! In the morning, I made him eggs instead of the sweet cereal or poptarts that he just loved. I saw a great improvement in his ability to focus. It was amazing!! Red dye was another trigger. I didn't realize how it affected him!
After much thought and prayer, I decided to homeschool my #1. It was the best decision I could have made. I just didn't want him to go to school during this transitional time for us. I had decided that I was not going to give him any more medicine and I knew if I put him back at school that they would pressure me into doing it. While I homeschooled I was able to focus on his behavior and teach him how to ignore distractions. I found out that the main reason he could not sit still in his seat was because he was bored! He would finish his work and then would get in trouble because he would want to speak to his friends. Also, he was so skinny that I am sure it hurt for him to sit still for too long. (That was something that Frank Lawlis actually experienced and talks about in his book.) There were other things too that I found out about my child. I found out that he would actually listen while doing some of the things the teachers were complaining about. In other words, it looked like he wasn't listening, but he was! There are different kinds of learners and obviously he is not a visual learner at all. He actually did better when his hands were busy. I compare it to the adults who will doodle on a sheet of paper while talking on the phone. It's basically the same thing. He was so smart that he had figured out a way of calming himself down. Unfortunately, it looked like he was not paying attention to the teachers.
To make a loooooong story short..... we were able to complete 2nd and 3rd grade in one year! He was so easy to teach and he was like a sponge absorbing all of the information faster than I could give it to him. I made sure to test him and give him plenty of seat work so that he would be ready for school. When it came time for him to go back to public school, he started in the 4th grade and finished with flying colors without ANY medicine!! He had the best teacher who was strict but very loving. It made the world of difference and I was so proud of him!
I hope this story gives you all the hope of what can be achieved. The moral to my story is to get as educated as you can about your child's condition. If you have a diagnosis then find out what that means. Read books and talk to other parents. Unfortunately, I didn't have any parents to talk to and so I was basically alone in all of this. I just wish I could have had some kind of support or someone to talk to that could relate. It's totally different when you have been down this road before. PLEASE.....consider your options. My wish is that I can spare others from what I went through. It's not fun and it's not worth it. If your child has a mild case of ADD/ADHD then consider changing the diet or making sure he gets enough sleep....limit computer and television time.....Also, I have learned that consistent and loving discipline does wonders! Try it....what do you have to lose?
**********************************************
A child's loving smile is the best medicine in the world.
**********************************************
Saturday, September 13, 2008
The #1 issue: Discipline and the Autistic Child
The biggest issue when it comes to dealing with Autism is how do you discipline a child who sometimes does not understand and doesn't even realize they do what they do? How much can they REALLY control and how much do they do because they are "testing their limits"? Also, what should your expectations be? Those are all very valid questions and it differs from child to child.
The biggest thing I want to say is you will do your child NO justice if you just make excuses for their actions. Even though there are things they might not be able to control, they still need to learn how to deal with society. One day, hopefully, they will be on their own and who will make excuses for them then? I am not going write a "How-to discipline" guide because I am faaaar from perfect, I definitely don't have all the answers, and I am still learning.... however, I am going to write about some things I have observed and some of my experiences. My hope is that someone will read this and say, "Oh....I haven't tried that before" or "I can totally relate!"
Today our #2 was baptized in our church and I was praying that things would go as smoothly as possible. However, when I got to the church at about 10:40am I noticed that he was getting a bit "excited" and his energy level was definitely rising. I was too busy getting the kids and myself ready in the morning that I TOTALLY forgot to make sure he got a good breakfast. To tell you the truth, I think he might not have eaten anything this morning. He usually fixes himself a bowl of cereal or eats whatever he finds in the fridge. However, he was so excited that he forgot to eat. I tried to get some food into his tummy (goldfish crackers), but unfortunately he was already too wired and it took a lot of redirection and holding him to keep him in his seat during the ceremony.
The ironic part of it all and the reason I am telling you about it is because as soon as we left and ate lunch and then got home, he was the calmest and sweetest boy I have seen in a loooooong time! I just wish everyone could have seen that. He was still excited about the baptism, but there was definitely more of a reverence in his countenance and he was able to focus more on the feelings that he was experiencing. This is a classic example of what I call a "sugar drop" and the cause of many "melt-downs" and outbursts. Most parents know that if a child is hungry they are going to be grumpy. It is even MORE important in a child within the spectrum to maintain blood sugar. If they go without food for too long, you will definitely see a change in behavior, focus, and mood. I experienced it today and I just felt compelled to write about it while it was still fresh in my mind.
One of the reasons for this post is in response to a comment that was left. I wanted to expand on that and give my input. My dear husband wrote :
"I think it's important for people to realize that having a symptom in the autistic spectrum is not the same thing as having a full-blown mental or physical handicap. We try to teach each of our children the same, and as if they were no different from anybody else. They do not need to grow up thinking they are only expected to meet a lower standard."
I totally agree with that and I think it's very important to let others know that. I have seen some parents use their children's condition as a reason not to discipline. That is an injustice!! Chidren in the spectrum need consistency and they thrive on it. They also need a lot of redirection and positive reinforcement. You can't just leave them to figure things out for themselves. The worst thing you could do is ignore what they do. It's almost like you need to be one step ahead of them and if they beat you to it, then you need to step in and explain why that is unacceptable. Don't ever let them hear you say, "Oh...Billy can't help doing that....he's got Autism." The child will then use that as a way to excuse his actions. Remember, they are extremely smart!
How much can they control and how much is it just "testing limits"? That is one of the hardest things to figure out. I have seen days when my #2 is calm, focused, and very mature. I then tell myself, why can't he be this way all the time? Should I raise the bar on my expectations? Last year, he had a wonderful teacher. She was pretty strict and hard on her students. However, she also loved them and it showed. I think she was the best example for me as a parent. I feel like if we can direct our children with love but with a high standard, they usually will meet that standard. It took almost the entire year, but by the end he was doing extremely well. We definitely saw a change. Now our expectations are much higher. We expect him to sit for longer periods of time. We expect him to do well in behavior at school. We also expect him to keep his hands to himself and respect personal space. So far, he has usually met our expectations. It's important to note that we also know his limitations. We know he can be easily over-stimulated. We also know that he is very tender-hearted and we try to avoid certain situations. It has taken us a long time to reach this point and we are so excited to see his growth and potential.
I have a lot of friends who deal with the "strong-willed child" syndrome. I have had that myself. All my sons have been strong-willed. If you can't handle a child when they are three or four then you definitely won't be able to handle them when they are eight or ten! Take it from me, don't give in!! If you give them an inch, they will take a yard and that is the truth. They will use all their ammunition to get to you, but just be strong. Don't let them guilt you into giving in either. My oldest did that all the time. It worked for the most part because I worked full-time and so I felt guilty already that I had to leave him in daycare or with a babysitter most of the day. (That's another loooong story that I will have to talk about on a different day....... How do you find the right daycare provider for your child?) We learned the hard way. The earlier you can intervene on behavior, the easier it will be.
Lastly, this should be a team effort. Speak with your spouse and develop a "game plan" that will work for both of you. Support one another and rely on each other. I heard recently that the rate of divorce among couples who have a child with special needs is extremely high. It doesn't surprise me. There is a lot of stress involved in raising these children. My husband and I have different strengths and weaknesses. We fill in those holes for each other. Sometimes we work like a fine-tuned machine......other times, we grind a bit. That's okay....I think that's normal. We just need to keep reminding ourselves it takes practice. Nobody is perfect and we just try the best that we can. We've definitely made a lot of mistakes, but hopefully we have learned from them. I am just so thankful that he has more patience than I do. I am convinced that one way or another we are given what we need. I guess I just need a little more patience. :) ********************************************************************
If you haven't already, start a "Gratitude Journal" and remind yourself each day of how lucky you truly are.
********************************************************************
The biggest thing I want to say is you will do your child NO justice if you just make excuses for their actions. Even though there are things they might not be able to control, they still need to learn how to deal with society. One day, hopefully, they will be on their own and who will make excuses for them then? I am not going write a "How-to discipline" guide because I am faaaar from perfect, I definitely don't have all the answers, and I am still learning.... however, I am going to write about some things I have observed and some of my experiences. My hope is that someone will read this and say, "Oh....I haven't tried that before" or "I can totally relate!"
Today our #2 was baptized in our church and I was praying that things would go as smoothly as possible. However, when I got to the church at about 10:40am I noticed that he was getting a bit "excited" and his energy level was definitely rising. I was too busy getting the kids and myself ready in the morning that I TOTALLY forgot to make sure he got a good breakfast. To tell you the truth, I think he might not have eaten anything this morning. He usually fixes himself a bowl of cereal or eats whatever he finds in the fridge. However, he was so excited that he forgot to eat. I tried to get some food into his tummy (goldfish crackers), but unfortunately he was already too wired and it took a lot of redirection and holding him to keep him in his seat during the ceremony.
The ironic part of it all and the reason I am telling you about it is because as soon as we left and ate lunch and then got home, he was the calmest and sweetest boy I have seen in a loooooong time! I just wish everyone could have seen that. He was still excited about the baptism, but there was definitely more of a reverence in his countenance and he was able to focus more on the feelings that he was experiencing. This is a classic example of what I call a "sugar drop" and the cause of many "melt-downs" and outbursts. Most parents know that if a child is hungry they are going to be grumpy. It is even MORE important in a child within the spectrum to maintain blood sugar. If they go without food for too long, you will definitely see a change in behavior, focus, and mood. I experienced it today and I just felt compelled to write about it while it was still fresh in my mind.
One of the reasons for this post is in response to a comment that was left. I wanted to expand on that and give my input. My dear husband wrote :
"I think it's important for people to realize that having a symptom in the autistic spectrum is not the same thing as having a full-blown mental or physical handicap. We try to teach each of our children the same, and as if they were no different from anybody else. They do not need to grow up thinking they are only expected to meet a lower standard."
I totally agree with that and I think it's very important to let others know that. I have seen some parents use their children's condition as a reason not to discipline. That is an injustice!! Chidren in the spectrum need consistency and they thrive on it. They also need a lot of redirection and positive reinforcement. You can't just leave them to figure things out for themselves. The worst thing you could do is ignore what they do. It's almost like you need to be one step ahead of them and if they beat you to it, then you need to step in and explain why that is unacceptable. Don't ever let them hear you say, "Oh...Billy can't help doing that....he's got Autism." The child will then use that as a way to excuse his actions. Remember, they are extremely smart!
How much can they control and how much is it just "testing limits"? That is one of the hardest things to figure out. I have seen days when my #2 is calm, focused, and very mature. I then tell myself, why can't he be this way all the time? Should I raise the bar on my expectations? Last year, he had a wonderful teacher. She was pretty strict and hard on her students. However, she also loved them and it showed. I think she was the best example for me as a parent. I feel like if we can direct our children with love but with a high standard, they usually will meet that standard. It took almost the entire year, but by the end he was doing extremely well. We definitely saw a change. Now our expectations are much higher. We expect him to sit for longer periods of time. We expect him to do well in behavior at school. We also expect him to keep his hands to himself and respect personal space. So far, he has usually met our expectations. It's important to note that we also know his limitations. We know he can be easily over-stimulated. We also know that he is very tender-hearted and we try to avoid certain situations. It has taken us a long time to reach this point and we are so excited to see his growth and potential.
I have a lot of friends who deal with the "strong-willed child" syndrome. I have had that myself. All my sons have been strong-willed. If you can't handle a child when they are three or four then you definitely won't be able to handle them when they are eight or ten! Take it from me, don't give in!! If you give them an inch, they will take a yard and that is the truth. They will use all their ammunition to get to you, but just be strong. Don't let them guilt you into giving in either. My oldest did that all the time. It worked for the most part because I worked full-time and so I felt guilty already that I had to leave him in daycare or with a babysitter most of the day. (That's another loooong story that I will have to talk about on a different day....... How do you find the right daycare provider for your child?) We learned the hard way. The earlier you can intervene on behavior, the easier it will be.
Lastly, this should be a team effort. Speak with your spouse and develop a "game plan" that will work for both of you. Support one another and rely on each other. I heard recently that the rate of divorce among couples who have a child with special needs is extremely high. It doesn't surprise me. There is a lot of stress involved in raising these children. My husband and I have different strengths and weaknesses. We fill in those holes for each other. Sometimes we work like a fine-tuned machine......other times, we grind a bit. That's okay....I think that's normal. We just need to keep reminding ourselves it takes practice. Nobody is perfect and we just try the best that we can. We've definitely made a lot of mistakes, but hopefully we have learned from them. I am just so thankful that he has more patience than I do. I am convinced that one way or another we are given what we need. I guess I just need a little more patience. :) ********************************************************************
If you haven't already, start a "Gratitude Journal" and remind yourself each day of how lucky you truly are.
********************************************************************
Wednesday, September 10, 2008
Does my child have Autism?
If you have a child that developed normally from birth and then all of sudden you notice a regression in speech, motor skills, or eye contact.....chances are there is something wrong. Also, if you have a child that fails to meet the "normal" milestones and seems to be in "their own little world" most of the time, or seems to avoid people or social interaction.....chances are there is something wrong. Don't wait to seek medical help or intervention. Early intervention is key!!
The first step is the diagnosing part. This is the hardest part for many parents. Some doctors want to dismiss what parents tell them or they are too busy to listen. You are your child's advocate....don't ever forget that! You know your child better than anyone and you have been blessed with intuition and "motherly or paternal" instinct. Fight for testing as if your child's life depended on it....'cause in reality, it does. Every state has its own laws and provisions for testing. Find out what they are in your area and utilize every resource available to you. If you can't find help in your area then look elsewhere. We live in Montgomery and ended up going to Children's Hospital in Birmingham to get the help WE needed. Lastly, don't give up! This is crucial! It may seem like all hope is lost and you have nowhere else to turn. If you look hard enough, you will find the answer. Trust me. :)
The next step is treatment. Once you have your child diagnosed or "labeled" then you have the ammunition you need to start treatment. With our child, he needed occupational therapy and speech therapy. He qualified for the Early Intervention Program of Alabama. He received the services free of charge and we were able to get him help in preschool. He had a Special Education representative come and help him with social skills, language, and other deficiencies. Unfortunately, not all teachers are taught how to deal with kids with autism. Most people think that if you have autism then you are also mentally retarded. That is so sad. Most of the kids I have met who have autism are among the brightest and creative people I know. Our child is great at math, piano, spelling, reading, and computers. That brings me to another point. Make sure you expose your child to various outlets. You won't know unless you try. I never imagined that my child had a gift for the piano. He learned how to play in one lesson! He memorized all the keys in a couple hours.....including the sharps and flats! We are definitely trying to develop that gift with him.
Lastly, I want to discuss Autism in general. Where do I begin? Autism is not a single condition or set of symptoms. There is a BROAD spectrum and so you can have a child who has it and can barely talk, while another child sounds like a "little professor". There are some who can't tolerate any noise, while others will just compensate. Not all children with autism are unsocial. My child is very social, but he just suffers from impulsiveness and immaturity. He can also become overstimulated faster than "normal" kids. Another point I want to make is that unlike other conditions such as Down's Syndrome or physical handicaps, you can't just look at a child and know they have autism. Most aren't born with any unusual physical traits. If you are a parent who has been blessed with normal healthy children, think twice about judging other parents who are struggling with this issue. You don't know how many times I heard: "you just need to discipline him more" or "there is nothing wrong with him, that's just an excuse". Boy....do I wish they were right!! In retrospect, we disciplined my second child more than my first because we were so determined that he did not end up like our first. We were definitely more strict and we expected more out of him. We just didn't know.....
My child has PDD- NOS. That stands for Pervasive Developmental Disorder-Not Otherwise Specified. This is a wonderful site I have found :
http://www.autismspeaks.org/navigating/pdd_nos.php
It explains it better than I can and provides a lot of advice and suggestions for parents with kids who have this challenge. It even discusses some of the challenges parents face. Very good stuff!
PDD-NOS is on the "higher functioning" side of the scale. There are days when I actually have to remind myself that there is anything wrong with my child because he will behave so well. Then there are THOSE days when I am reminded. His behavior can fluctuate from one hour to the next. It is soooo unpredictable. Usually, if I can minimize the stimuli and control his diet then everything is good. However, when you come from a Latino family who is usually loud, excited, and definitely likes to eat "good food" then it is a big challenge. The solution is to try and educate your family as much as you can. I have to warn you that there will be many skeptics. There will be some moments of frustration....but don't give up. They will eventually come around and learn to accept your child as he is.
It never ceases to amaze me how far parents are willing to go for their children. I have a friend who has a son with autism and she drives him to a special preschool every day (Mon-Fri) that is two hours away, comes home to tend to her other little ones, and then picks him up in the afternoon so that he can get the education and therapy that he needs. Unfortunately, our area does not offer ABA therapy and so she is left with no other option. I also know of many parents who put their children in a special private school (although they REALLY can't afford it) in our area that will accept children with autism because public schools will not do their job. We had a heck of a time with our son in kindergarten. It's so sad 'cause that's supposed to be the funnest year and the most memorable. For us, it was very memorable......but not for good reasons. We ended up with a teacher who had no patience and did not know how to deal with kids that had challenges. After a month of trying and working with the school, we finally decided to homeschool him. That was the best decision we could have made. I knew he was smart, but didn't realize HOW smart he was. He learned to read in just a few weeks and by the time we finished he was ready for first grade. He goes to a wonderful private school now and when they tested him, he reads on a high school level and he is at least one or two years ahead in all of his subjects. We are so proud of him!
For those of you struggling....just know that there is light at the end of the tunnel. It may not look that way now, but one day you will find your answer just as I did. Every child is different whether they have challenges or not...that's just a given. We as parents just have to figure out what is best for our kids. Just educate yourself. Read lots of books and surf the internet. Be careful of people who try and prey on the vulnerable! There is a lot of misinformation and many wacky websites. Use your common sense and it doesn't hurt to pray. Pray for your children and pray that you will be inspired to make the right decisions.
*******************************************************************************
Our children are tiny rays of hope and love sent to us from above.
*******************************************************************************
The first step is the diagnosing part. This is the hardest part for many parents. Some doctors want to dismiss what parents tell them or they are too busy to listen. You are your child's advocate....don't ever forget that! You know your child better than anyone and you have been blessed with intuition and "motherly or paternal" instinct. Fight for testing as if your child's life depended on it....'cause in reality, it does. Every state has its own laws and provisions for testing. Find out what they are in your area and utilize every resource available to you. If you can't find help in your area then look elsewhere. We live in Montgomery and ended up going to Children's Hospital in Birmingham to get the help WE needed. Lastly, don't give up! This is crucial! It may seem like all hope is lost and you have nowhere else to turn. If you look hard enough, you will find the answer. Trust me. :)
The next step is treatment. Once you have your child diagnosed or "labeled" then you have the ammunition you need to start treatment. With our child, he needed occupational therapy and speech therapy. He qualified for the Early Intervention Program of Alabama. He received the services free of charge and we were able to get him help in preschool. He had a Special Education representative come and help him with social skills, language, and other deficiencies. Unfortunately, not all teachers are taught how to deal with kids with autism. Most people think that if you have autism then you are also mentally retarded. That is so sad. Most of the kids I have met who have autism are among the brightest and creative people I know. Our child is great at math, piano, spelling, reading, and computers. That brings me to another point. Make sure you expose your child to various outlets. You won't know unless you try. I never imagined that my child had a gift for the piano. He learned how to play in one lesson! He memorized all the keys in a couple hours.....including the sharps and flats! We are definitely trying to develop that gift with him.
Lastly, I want to discuss Autism in general. Where do I begin? Autism is not a single condition or set of symptoms. There is a BROAD spectrum and so you can have a child who has it and can barely talk, while another child sounds like a "little professor". There are some who can't tolerate any noise, while others will just compensate. Not all children with autism are unsocial. My child is very social, but he just suffers from impulsiveness and immaturity. He can also become overstimulated faster than "normal" kids. Another point I want to make is that unlike other conditions such as Down's Syndrome or physical handicaps, you can't just look at a child and know they have autism. Most aren't born with any unusual physical traits. If you are a parent who has been blessed with normal healthy children, think twice about judging other parents who are struggling with this issue. You don't know how many times I heard: "you just need to discipline him more" or "there is nothing wrong with him, that's just an excuse". Boy....do I wish they were right!! In retrospect, we disciplined my second child more than my first because we were so determined that he did not end up like our first. We were definitely more strict and we expected more out of him. We just didn't know.....
My child has PDD- NOS. That stands for Pervasive Developmental Disorder-Not Otherwise Specified. This is a wonderful site I have found :
http://www.autismspeaks.org/navigating/pdd_nos.php
It explains it better than I can and provides a lot of advice and suggestions for parents with kids who have this challenge. It even discusses some of the challenges parents face. Very good stuff!
PDD-NOS is on the "higher functioning" side of the scale. There are days when I actually have to remind myself that there is anything wrong with my child because he will behave so well. Then there are THOSE days when I am reminded. His behavior can fluctuate from one hour to the next. It is soooo unpredictable. Usually, if I can minimize the stimuli and control his diet then everything is good. However, when you come from a Latino family who is usually loud, excited, and definitely likes to eat "good food" then it is a big challenge. The solution is to try and educate your family as much as you can. I have to warn you that there will be many skeptics. There will be some moments of frustration....but don't give up. They will eventually come around and learn to accept your child as he is.
It never ceases to amaze me how far parents are willing to go for their children. I have a friend who has a son with autism and she drives him to a special preschool every day (Mon-Fri) that is two hours away, comes home to tend to her other little ones, and then picks him up in the afternoon so that he can get the education and therapy that he needs. Unfortunately, our area does not offer ABA therapy and so she is left with no other option. I also know of many parents who put their children in a special private school (although they REALLY can't afford it) in our area that will accept children with autism because public schools will not do their job. We had a heck of a time with our son in kindergarten. It's so sad 'cause that's supposed to be the funnest year and the most memorable. For us, it was very memorable......but not for good reasons. We ended up with a teacher who had no patience and did not know how to deal with kids that had challenges. After a month of trying and working with the school, we finally decided to homeschool him. That was the best decision we could have made. I knew he was smart, but didn't realize HOW smart he was. He learned to read in just a few weeks and by the time we finished he was ready for first grade. He goes to a wonderful private school now and when they tested him, he reads on a high school level and he is at least one or two years ahead in all of his subjects. We are so proud of him!
For those of you struggling....just know that there is light at the end of the tunnel. It may not look that way now, but one day you will find your answer just as I did. Every child is different whether they have challenges or not...that's just a given. We as parents just have to figure out what is best for our kids. Just educate yourself. Read lots of books and surf the internet. Be careful of people who try and prey on the vulnerable! There is a lot of misinformation and many wacky websites. Use your common sense and it doesn't hurt to pray. Pray for your children and pray that you will be inspired to make the right decisions.
*******************************************************************************
Our children are tiny rays of hope and love sent to us from above.
*******************************************************************************
Saturday, September 6, 2008
What is Wilson's Disease?
I thought I would start by talking about Wilson's Disease. It has been about six months since my daughter was diagnosed with it and two years since I first heard about it. Let me tell you about that since I think it is critical. If your child has any issues with copper then PLEASE explore the idea of ruling out Wilson's. Don't wait because the sooner you catch it, the better chance your child will have of leading a normal and relatively healthy life. When you google "Wilson's Disease" there is really not too much information about patients who have it who AREN'T sick or struggling with liver disease. The reason is....most patients don't find out until they are symptomatic. Doctors told us that our child is an "enigma" of sorts. They don't really know how to treat her. That is so reassuring.....NOT!!
Wilson's Disease is caused by a mutation in the ATP7B gene. Usually it is diagnosed by laboratory testing (abnormal copper levels, low ceruloplasmin, elevated liver enzymes) and looking for a ring of copper in the eye called a "Kayser Fleischer" ring. These are good indications that you should have further testing. The genetic testing is outrageously expensive and so unfortunately, you have to do all the screening tests first. (Otherwise insurance won't cover it.) Take it from me, you don't want to skip any steps. I am still fighting for insurance coverage for my family for the genetic testing we had to do. You see....once you find out your child has this genetic mutation there is a big chance that others in your family might have it too. You definitely don't want to wait until there are symptoms. By then, your liver could be ruined and you could have copper built up in your brain. All of this could be avoided by a simple blood test! All you have to do is test serum copper. Imagine that....a simple blood test could prevent this. Then why don't they test babies? Well...that's my big crusade. I am determined to make that happen. The same way they test babies for other deficiencies they could test the copper. My mom told me today that she found out they have added the serum copper level to the newborn testing in her city. I am so excited that some progress is being made.
So...why should this matter to you all? Well, look at the statistics:
"One in 100 individuals in the general population carries one abnormal copy of the Wilson disease gene. Carriers have one normal and one abnormal gene. All (100%) children of those afflicted with Wilson disease receive at least one abnormal copy of the Wilson disease gene. One half (50%) of a carrier's children receive at least one abnormal copy of the Wilson disease gene."
In my opinion, this isn't such a "rare" disease after all. We found out that my husband and I, along with our other three kids are carriers. If any of my children marry a carrier and have children then they have a good chance of passing the mutation to their kids. It's good to know. We will definitely educate them to always be mindful and have it in the back of their minds just in case any of their children happen to have liver issues. At least they could tell their doctors that they need to screen for Wilson's.
Always trust your instincts. If you feel like there is something wrong with your child, don't just dismiss it. My daughter's laboratory testing showed something was wrong (she had extremely low copper with value of 7 when normals are 90-180, slightly elevated liver enzymes, anemia, low ceruloplasmin, among other abnormal values) and even then the doctors wanted to dismiss it. I still don't understand that. I went online right away to research and then talked with other doctors. I got a second opinion, then a third, then a fourth. FINALLY, I was blessed with a doctor that was a Genetic Specialist and Pediatric Neurologist. I definitely hit the jackpot with her! She had a lot of experience and although she was hopeful that my daughter did not have Wilson's, she still tested her for it. I still can't get over how easy it was to diagnose her in the end.....with a simple blood draw. We had done EEG's and MRI, 24-hour urine copper tests, multiple serum copper tests because the doctors did not want to believe the levels were right (that is another loooong story right there), various other laboratory testing, and even did a tissue culture from her arm to send to Europe for further testing. In the end, it was the ATP7B genetic test that proved it. The technology is there and we need to educate the doctors to use it.
My biggest frustration right now is that since my daughter is healthy the doctors pretty much don't have any answers for me. For now, I am following a low copper diet (because I researched it and mentioned it to the team of doctors), but otherwise I would be doing nothing else. There are no drugs she can take because the side-effects would not be worth it and although her liver enzymes are elevated, her urine copper is within normal limits.
I feel VERY blessed to have a healthy child and I want to keep her that way. Therefore, I am going to keep on doing what I am doing (since it seems to be working), and I will treasure every day I have with her because I know that there are many parents out there who are not so fortunate.
*******************************************************************************
Make an effort to listen to your child today....they might just surprise you.
*******************************************************************************
Wilson's Disease is caused by a mutation in the ATP7B gene. Usually it is diagnosed by laboratory testing (abnormal copper levels, low ceruloplasmin, elevated liver enzymes) and looking for a ring of copper in the eye called a "Kayser Fleischer" ring. These are good indications that you should have further testing. The genetic testing is outrageously expensive and so unfortunately, you have to do all the screening tests first. (Otherwise insurance won't cover it.) Take it from me, you don't want to skip any steps. I am still fighting for insurance coverage for my family for the genetic testing we had to do. You see....once you find out your child has this genetic mutation there is a big chance that others in your family might have it too. You definitely don't want to wait until there are symptoms. By then, your liver could be ruined and you could have copper built up in your brain. All of this could be avoided by a simple blood test! All you have to do is test serum copper. Imagine that....a simple blood test could prevent this. Then why don't they test babies? Well...that's my big crusade. I am determined to make that happen. The same way they test babies for other deficiencies they could test the copper. My mom told me today that she found out they have added the serum copper level to the newborn testing in her city. I am so excited that some progress is being made.
So...why should this matter to you all? Well, look at the statistics:
"One in 100 individuals in the general population carries one abnormal copy of the Wilson disease gene. Carriers have one normal and one abnormal gene. All (100%) children of those afflicted with Wilson disease receive at least one abnormal copy of the Wilson disease gene. One half (50%) of a carrier's children receive at least one abnormal copy of the Wilson disease gene."
In my opinion, this isn't such a "rare" disease after all. We found out that my husband and I, along with our other three kids are carriers. If any of my children marry a carrier and have children then they have a good chance of passing the mutation to their kids. It's good to know. We will definitely educate them to always be mindful and have it in the back of their minds just in case any of their children happen to have liver issues. At least they could tell their doctors that they need to screen for Wilson's.
Always trust your instincts. If you feel like there is something wrong with your child, don't just dismiss it. My daughter's laboratory testing showed something was wrong (she had extremely low copper with value of 7 when normals are 90-180, slightly elevated liver enzymes, anemia, low ceruloplasmin, among other abnormal values) and even then the doctors wanted to dismiss it. I still don't understand that. I went online right away to research and then talked with other doctors. I got a second opinion, then a third, then a fourth. FINALLY, I was blessed with a doctor that was a Genetic Specialist and Pediatric Neurologist. I definitely hit the jackpot with her! She had a lot of experience and although she was hopeful that my daughter did not have Wilson's, she still tested her for it. I still can't get over how easy it was to diagnose her in the end.....with a simple blood draw. We had done EEG's and MRI, 24-hour urine copper tests, multiple serum copper tests because the doctors did not want to believe the levels were right (that is another loooong story right there), various other laboratory testing, and even did a tissue culture from her arm to send to Europe for further testing. In the end, it was the ATP7B genetic test that proved it. The technology is there and we need to educate the doctors to use it.
My biggest frustration right now is that since my daughter is healthy the doctors pretty much don't have any answers for me. For now, I am following a low copper diet (because I researched it and mentioned it to the team of doctors), but otherwise I would be doing nothing else. There are no drugs she can take because the side-effects would not be worth it and although her liver enzymes are elevated, her urine copper is within normal limits.
I feel VERY blessed to have a healthy child and I want to keep her that way. Therefore, I am going to keep on doing what I am doing (since it seems to be working), and I will treasure every day I have with her because I know that there are many parents out there who are not so fortunate.
*******************************************************************************
Make an effort to listen to your child today....they might just surprise you.
*******************************************************************************
Thursday, September 4, 2008
It's a new day!
With all the things I have to do....why in the world would I start up a blog? Well, I think it's because of THAT reason that I feel I must do it. It will be an outlet of sorts for all my inner frustrations mingled with a little bit of wisdom I have acquired over the years. I have so many things I want to tell others and this is a great forum.
My children mean the world to me, but boy....has it been a ride!! I think that I had the best of intentions with each of them, but they don't come with instructions. After a lot of soul searching I eventually learned that we must accept what we are given and sometimes that in itself is the lesson. We can't control everything, and so we must always move forward and look at the bigger picture. Only then will we grow.
Before I begin this mission of mine, I would like to give everyone a synopsis of why I am doing this. I want everyone to know what my motivations are. Even though this will be a long post, I am sure many will have many questions. I plan on answering those eventually and I will include more medical information to back up my claims.
I have been blessed with four children. My oldest was diagnosed with ADHD at the tender age of 3. My husband and I didn't want to believe it and we just dealt with all of the social and misc. issues without any medical intervention. When we felt we had no other option, we turned to medicine. We started the regime and saw our child waste away before our eyes. We no longer had our care-free sweet child but a "zombie" who would have outbursts of anger without any warning. After a year, we decided that medicine was not the answer. We turned to psychologists and neurologists for help and found MANY other options we didn't know about such as diet and behavior modification. We now have an almost twelve year-old child who is doing great in school, is a Star Scout, and is a joy in my life. He still has issues, but they are manageable. I will expand later about our journey with our oldest child in a future post.
My second baby was born healthy and strong. He reached milestones before his older brother such as walking at 9 months. However, at around 2 years of age we saw something happen. He wasn't talking like he should and we knew that something was wrong. (Call it mother's intuition) We talked to the pediatrician and of course they said he's got the "younger brother" syndrome where others talk for him and so he doesn't need to. Of course, I was relieved and so I didn't worry about it. Unfortunately, by the age of three he still wasn't talking very much and I also noticed his fine motor skills were not developing right either. We had him tested and he was diagnosed with PDD (pervasive developmental disorder). My husband and I didn't want to believe that either. However, he did receive the occupational therapy and speech therapy. We saw a great improvement and eventually came to terms with it. We accept that our beautiful, smart, sweet child has high functioning Autism. It has taken me YEARS to accept. However, it just means we have to work THAT much harder with him. I have faith that he will grow up to be a fine young man and do whatever it is that he desires!
My next baby was a girl! I was thrilled and anxious at the same time. Would she be "normal"? Would I have any "issues"? Well...she started off as a normal and healthy baby. As she grew up I tried not to be paranoid. When she didn't walk at 12 months I didn't freak out. She finally walked at 15 months. I was thrilled when at 9 months she said, "Hi Gary!" At least I knew that she would talk. Well, that was short-lived. At around 2 years of age we noticed she was walking on her tip-toes. I thought it was cute, but later I would find out that it was a "symptom". She had started to get interested in potty-training and regressed. She also slept a lot....more than usual. She would take two long naps a day and then go to bed early and sleep until the next day. I have to admit that I was thrilled! Who wouldn't be? I was a busy mom of three and to have that extra time was wonderful! However, her speech was almost gone by the time we had her evaluated. Then came the bombshell....the speech therapist noticed she was having "staring spells" also known as "optic seizures". I had no idea what that was. We sought the help of a neurologist who told us that we needed to do a bunch of tests and figure out what was happening. She was showing some signs of autism but he wasn't going to diagnose her just yet. This was a journey that is not over to this day. This same neurologist told us that it was possible that vaccines may have done injury to our child! Let me repeat that: A MEDICAL DOCTOR TOLD US THAT IT WAS POSSIBLE THAT VACCINES MAY HAVE CAUSED DAMAGE TO OUR DAUGHTER!! WHAT??????!!!! Vaccines are supposed to be safe. Well....let me tell you all that we are misled to believe that giving tons of shots to a little newborn baby is safe. My daughter was only 6 lbs. 2 oz. and she received the equivalent of 16 shots before her first birthday....including a hepatitis B shot before she was a day old! This doctor (I like to call him our guardian angel) tested Sarah and among the tests he found that her copper levels were not normal. Unfortunately, this doctor moved away and we spent the next 2 years trying to convince other doctors and neurologists that something was wrong with our daughter. We FINALLY got her an appointment to a Children's Hospital doctor and we got a diagnosis. She has Wilson's Disease. It's a very rare metabolic disorder and she would haved died if not treated. So....now we had a diagnosis, but unfortunately it did NOT explain her symptoms. The only thing it explained was her elevated liver enzymes and her copper levels. Sadly, none of the doctors want to even touch the vaccine issue. They are all so closed-minded about the topic. We have filed a suit with the Omnibus Trial hearing and I will definitely keep you all updated on that.
My fourth baby was born healthy, strong, and eager to get here. I literally did not have to push him out. He was born in less than 15 mins. from the time I reached the hospital and he actually looked up at me with his arms outstretched. In the first few minutes of his life I knew he was smart. I could see it in his eyes. My husband and I had a plan with this baby. We knew he would be our last and we weren't going to make the same mistake with him. We told the nurse, "We don't want him to get ANY shots!" She looked at us as if we were insane. "No shots?" I nodded. Then I whispered to Gary, "Follow her... I don't trust her." And guess what? She was actually going to give him the HEPATITIS B vaccine!! If Gary had not stopped them, they would have administered it to him. (Thank goodness for mommy instincts, huh?) He came home jaundiced and we had to put him in the biliblanket. His nickname was "gloworm". We had a heck of time getting him to eat. I tried to nurse him and he started to not want to suck. I was so scared. It happened really quickly, but he dropped down about 3 pounds in a couple weeks! I was taking him in for bilirubin check AND had a nurse come every day to see him and test him and NONE of us noticed how much weight he had lost! It was insane!! He ended up in the hospital for a couple days with dehydration and was lethargic. I thought I was going to lose him! Once home, we had to treat him like a preemie. I had to milk the nipple on the bottle (yes...I decided to pump and supplement with formula) and I had to do this every TWO hours! I didn't get any sleep during that time and so to be honest, I don't remember much. All I know is that he is so healthy and strong now... still picky eater, but healthy. We worked out a much safer vaccine schedule and he is doing great. He is 2 1/2 and is talking more than my others at 3 1/2. He is socially on target and doing great in preschool. The teachers just love him. They told me the other day that he is good at following directions! Imagine that.... a two year old who follows directions?!!
Everyone is entitled to their own opinions...... however, I have proof that something happened to my babies. I vaccinated my first three "on schedule" and they all have problems. I waited for our fourth to be two months before giving him ANY vaccines. At that point I only gave him one and made sure that he didn't have any reactions (such as fever, fussiness, or swelling) before giving him the next one a couple months later. There are some vaccines that I am still debating in my head about such as the chicken pox vaccine. I don't know if it's worth the risk. I am definitely NOT giving him the hepatitis vaccine. That one is totally insane. He is healthy and "normal" in every way. You tell me....what other explanation is there for the cause of problems with my other three? My doctors tried to say there are environmental toxins, etc... However, my youngest has been exposed to the same "environmental toxins". What about diet? Well...my youngest actually is a picky eater so that's definitely not it. Let's see.....what about genetics? Well....they all have the same mom and dad.
I believe that genetics does play a role in all of this. I think that in some children they are born with the inability to clear out all of the toxins in the vaccines. I have medical proof in Sarah's laboratory results that her ceruloplasmin is low and so she can't get rid of copper among other things. Who knows what deficiencies the other kids may have? Also, who's to say that there aren't millions of kids who have health issues caused by vaccines but doctors are not willing to look into it? All they look for are "adverse reactions" and even then...they won't report them unless it happens right after the vaccine was given. What if there is a cummulative effect with vaccines? Maybe one vaccine doesn't do harm, but then the next one is given before the baby's body can clear out the previous toxins and then you give then a THIRD shot and a fourth, and so on......
The truth of the matter is that no matter how good a parent you are, if your child has autism, ADHD, or other issues you feel like a failure. You see.....my children don't have Down's Syndrome or any obvious trait that would let others know. When I go somewhere and my seven year-old is eager or anxious, I have to be careful and mindful about how he may react to things. Instead of using his words, he may react like a three year-old. How do you explain THAT to other parents? In their eyes they see a big boy (who actually looks like he's at least 8 years old) who just pushed their five year-old out of the way as he was trying to get to something on the other side of the room. We work on impulsivity and dealing with emotions on a daily basis. Our work is never done.
I am grateful for a wonderful husband who supports me and loves me. He also is the most patient man you will ever meet. I know that having special needs children is hard on the moms, but dads are often overlooked. It takes a patient and loving hand to guide children, but it also takes a lot of discipline in the form of structure and positive reinforcement. Spanking and yelling at kids only makes the parents feel better. It will resolve the problem temporarily, but if you are trying to teach a child how to deal with life situations then you have to teach them in a way that they will learn those skills. Now...don't get me wrong, we spank...but that is not our main form of discipline. Besides, in this day and age you can't spank a child in public anyways....so what would you do if you were at the store and your child acted out? Spank him in the van? NOPE! You'll get caught on video and wind up on CNN.
There is lots more information that I would love to share with you, but I fear I have written a book already. In the future, I will give you all information I have learned in my two years of research on vaccines, and I will hopefully spare many of you the grief and pain of diagnosing and treating children with Wilson's Disease.
For now, I will just exhale and tell myself, "It's a new day!"
***********************************************************************************************
Hug your littles ones today (if you haven't already) and tell them how much you love them.
***********************************************************************************************
My children mean the world to me, but boy....has it been a ride!! I think that I had the best of intentions with each of them, but they don't come with instructions. After a lot of soul searching I eventually learned that we must accept what we are given and sometimes that in itself is the lesson. We can't control everything, and so we must always move forward and look at the bigger picture. Only then will we grow.
Before I begin this mission of mine, I would like to give everyone a synopsis of why I am doing this. I want everyone to know what my motivations are. Even though this will be a long post, I am sure many will have many questions. I plan on answering those eventually and I will include more medical information to back up my claims.
I have been blessed with four children. My oldest was diagnosed with ADHD at the tender age of 3. My husband and I didn't want to believe it and we just dealt with all of the social and misc. issues without any medical intervention. When we felt we had no other option, we turned to medicine. We started the regime and saw our child waste away before our eyes. We no longer had our care-free sweet child but a "zombie" who would have outbursts of anger without any warning. After a year, we decided that medicine was not the answer. We turned to psychologists and neurologists for help and found MANY other options we didn't know about such as diet and behavior modification. We now have an almost twelve year-old child who is doing great in school, is a Star Scout, and is a joy in my life. He still has issues, but they are manageable. I will expand later about our journey with our oldest child in a future post.
My second baby was born healthy and strong. He reached milestones before his older brother such as walking at 9 months. However, at around 2 years of age we saw something happen. He wasn't talking like he should and we knew that something was wrong. (Call it mother's intuition) We talked to the pediatrician and of course they said he's got the "younger brother" syndrome where others talk for him and so he doesn't need to. Of course, I was relieved and so I didn't worry about it. Unfortunately, by the age of three he still wasn't talking very much and I also noticed his fine motor skills were not developing right either. We had him tested and he was diagnosed with PDD (pervasive developmental disorder). My husband and I didn't want to believe that either. However, he did receive the occupational therapy and speech therapy. We saw a great improvement and eventually came to terms with it. We accept that our beautiful, smart, sweet child has high functioning Autism. It has taken me YEARS to accept. However, it just means we have to work THAT much harder with him. I have faith that he will grow up to be a fine young man and do whatever it is that he desires!
My next baby was a girl! I was thrilled and anxious at the same time. Would she be "normal"? Would I have any "issues"? Well...she started off as a normal and healthy baby. As she grew up I tried not to be paranoid. When she didn't walk at 12 months I didn't freak out. She finally walked at 15 months. I was thrilled when at 9 months she said, "Hi Gary!" At least I knew that she would talk. Well, that was short-lived. At around 2 years of age we noticed she was walking on her tip-toes. I thought it was cute, but later I would find out that it was a "symptom". She had started to get interested in potty-training and regressed. She also slept a lot....more than usual. She would take two long naps a day and then go to bed early and sleep until the next day. I have to admit that I was thrilled! Who wouldn't be? I was a busy mom of three and to have that extra time was wonderful! However, her speech was almost gone by the time we had her evaluated. Then came the bombshell....the speech therapist noticed she was having "staring spells" also known as "optic seizures". I had no idea what that was. We sought the help of a neurologist who told us that we needed to do a bunch of tests and figure out what was happening. She was showing some signs of autism but he wasn't going to diagnose her just yet. This was a journey that is not over to this day. This same neurologist told us that it was possible that vaccines may have done injury to our child! Let me repeat that: A MEDICAL DOCTOR TOLD US THAT IT WAS POSSIBLE THAT VACCINES MAY HAVE CAUSED DAMAGE TO OUR DAUGHTER!! WHAT??????!!!! Vaccines are supposed to be safe. Well....let me tell you all that we are misled to believe that giving tons of shots to a little newborn baby is safe. My daughter was only 6 lbs. 2 oz. and she received the equivalent of 16 shots before her first birthday....including a hepatitis B shot before she was a day old! This doctor (I like to call him our guardian angel) tested Sarah and among the tests he found that her copper levels were not normal. Unfortunately, this doctor moved away and we spent the next 2 years trying to convince other doctors and neurologists that something was wrong with our daughter. We FINALLY got her an appointment to a Children's Hospital doctor and we got a diagnosis. She has Wilson's Disease. It's a very rare metabolic disorder and she would haved died if not treated. So....now we had a diagnosis, but unfortunately it did NOT explain her symptoms. The only thing it explained was her elevated liver enzymes and her copper levels. Sadly, none of the doctors want to even touch the vaccine issue. They are all so closed-minded about the topic. We have filed a suit with the Omnibus Trial hearing and I will definitely keep you all updated on that.
My fourth baby was born healthy, strong, and eager to get here. I literally did not have to push him out. He was born in less than 15 mins. from the time I reached the hospital and he actually looked up at me with his arms outstretched. In the first few minutes of his life I knew he was smart. I could see it in his eyes. My husband and I had a plan with this baby. We knew he would be our last and we weren't going to make the same mistake with him. We told the nurse, "We don't want him to get ANY shots!" She looked at us as if we were insane. "No shots?" I nodded. Then I whispered to Gary, "Follow her... I don't trust her." And guess what? She was actually going to give him the HEPATITIS B vaccine!! If Gary had not stopped them, they would have administered it to him. (Thank goodness for mommy instincts, huh?) He came home jaundiced and we had to put him in the biliblanket. His nickname was "gloworm". We had a heck of time getting him to eat. I tried to nurse him and he started to not want to suck. I was so scared. It happened really quickly, but he dropped down about 3 pounds in a couple weeks! I was taking him in for bilirubin check AND had a nurse come every day to see him and test him and NONE of us noticed how much weight he had lost! It was insane!! He ended up in the hospital for a couple days with dehydration and was lethargic. I thought I was going to lose him! Once home, we had to treat him like a preemie. I had to milk the nipple on the bottle (yes...I decided to pump and supplement with formula) and I had to do this every TWO hours! I didn't get any sleep during that time and so to be honest, I don't remember much. All I know is that he is so healthy and strong now... still picky eater, but healthy. We worked out a much safer vaccine schedule and he is doing great. He is 2 1/2 and is talking more than my others at 3 1/2. He is socially on target and doing great in preschool. The teachers just love him. They told me the other day that he is good at following directions! Imagine that.... a two year old who follows directions?!!
Everyone is entitled to their own opinions...... however, I have proof that something happened to my babies. I vaccinated my first three "on schedule" and they all have problems. I waited for our fourth to be two months before giving him ANY vaccines. At that point I only gave him one and made sure that he didn't have any reactions (such as fever, fussiness, or swelling) before giving him the next one a couple months later. There are some vaccines that I am still debating in my head about such as the chicken pox vaccine. I don't know if it's worth the risk. I am definitely NOT giving him the hepatitis vaccine. That one is totally insane. He is healthy and "normal" in every way. You tell me....what other explanation is there for the cause of problems with my other three? My doctors tried to say there are environmental toxins, etc... However, my youngest has been exposed to the same "environmental toxins". What about diet? Well...my youngest actually is a picky eater so that's definitely not it. Let's see.....what about genetics? Well....they all have the same mom and dad.
I believe that genetics does play a role in all of this. I think that in some children they are born with the inability to clear out all of the toxins in the vaccines. I have medical proof in Sarah's laboratory results that her ceruloplasmin is low and so she can't get rid of copper among other things. Who knows what deficiencies the other kids may have? Also, who's to say that there aren't millions of kids who have health issues caused by vaccines but doctors are not willing to look into it? All they look for are "adverse reactions" and even then...they won't report them unless it happens right after the vaccine was given. What if there is a cummulative effect with vaccines? Maybe one vaccine doesn't do harm, but then the next one is given before the baby's body can clear out the previous toxins and then you give then a THIRD shot and a fourth, and so on......
The truth of the matter is that no matter how good a parent you are, if your child has autism, ADHD, or other issues you feel like a failure. You see.....my children don't have Down's Syndrome or any obvious trait that would let others know. When I go somewhere and my seven year-old is eager or anxious, I have to be careful and mindful about how he may react to things. Instead of using his words, he may react like a three year-old. How do you explain THAT to other parents? In their eyes they see a big boy (who actually looks like he's at least 8 years old) who just pushed their five year-old out of the way as he was trying to get to something on the other side of the room. We work on impulsivity and dealing with emotions on a daily basis. Our work is never done.
I am grateful for a wonderful husband who supports me and loves me. He also is the most patient man you will ever meet. I know that having special needs children is hard on the moms, but dads are often overlooked. It takes a patient and loving hand to guide children, but it also takes a lot of discipline in the form of structure and positive reinforcement. Spanking and yelling at kids only makes the parents feel better. It will resolve the problem temporarily, but if you are trying to teach a child how to deal with life situations then you have to teach them in a way that they will learn those skills. Now...don't get me wrong, we spank...but that is not our main form of discipline. Besides, in this day and age you can't spank a child in public anyways....so what would you do if you were at the store and your child acted out? Spank him in the van? NOPE! You'll get caught on video and wind up on CNN.
There is lots more information that I would love to share with you, but I fear I have written a book already. In the future, I will give you all information I have learned in my two years of research on vaccines, and I will hopefully spare many of you the grief and pain of diagnosing and treating children with Wilson's Disease.
For now, I will just exhale and tell myself, "It's a new day!"
***********************************************************************************************
Hug your littles ones today (if you haven't already) and tell them how much you love them.
***********************************************************************************************
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