Wow! The last few weeks have been amazing and trying all bundled into to one!! We contacted Geisinger to confirm they received lab work we faxed (reflecting Thyroid levels) along with the letter to the Doctor (see previous Blog). The Receptionist confirmed that the Doctor received and reviewed the information. We expected to discuss the results at Caleb's follow-up appointment in a few weeks with a different Pediactric Neurologist. If we wanted to meet specifically with Dr. Stayer we would have to wait longer or travel to Danville. We opted to go to a closer office in Altoona so we decided that it would be okay to see a different doctor.
On Monday, we arrived at the local office for the children's hospital. The Doctor went over the same examination conducted 6 months prior. He checked Caleb's reflexes and reaction to different objects that he carried in his bag. They included a light that he darted around the room, A long bar that he used to make a buzzing sound, and another long bar with a little wheel on the end that he used to check his reflexes. Then he asked us a few questions about Caleb. What does Caleb like to do? Can he draw a circle? How is potty training? Does he alternate his feet when he goes up the stairs. We informed him that Caleb liked to push his cars and play outside. He does not like to color but he's drawn what appeared to be a circle. Potty training has not shown any results for a long time. Caleb will keep his underwear dry but will not go to the potty. He would hold it all day and wait until the night when it was bedtime (and he got a diaper) to go. I've tried chasing him around all day and asking him if he had to go. We even paid for an EBook and used the method of chasing him around all day and using positive reinforcement to keep him dry. We hid all the diapers in the house so we would not put a diaper on him. Less then 1 hour after putting him to bed...he was wet. Hmmm...You name it we've tried it !!!! We used to worry about what everyone thought about Caleb still being in diapers since he is 4 years old. We had to let go of that along time ago if we were ever going to move on!!! We have to always keep in mind that it doesn't matter what other people think. It matters that Caleb is not ready and we are not going to push him and stress out about it. Our hope is that his younger brother is easier to potty train and Caleb will catch on!!! We informed the doctor that we are working on getting him an album together with the pictures of the steps of the process of using the bathroom. The doctor seemed annoyed. Furthermore, we informed him that Caleb does not alternate feet up and down the stairs correctly. He is getting physical and occupational therapy to help him use the right side of his body.
At this point he asked us if we had any questions. We asked if he was going to go over any of the results with us because we were under the impression that that is what this appointment was about. He then asked what results we wanted to discuss. At this point we did not know what to think. Was it a mistake to meet with a different doctor then the original examiner? Of course, by now we have learned that WE have to be Caleb's advocate. Nobody else!!! We can't expect that they are going to review the notes, take notes and respect other information we have to tell them. We tell you this not to complain but to give you a glimpe into our world. If you have a child that has been diagnosed with any condition, you must not expect the doctors to care about your child like you do. He or She has spent less then an hour with your child, and does not know your child like you do. Doctors are rushed nowadays and unfortunately it is some more then others. We know for a fact that it takes up to 1 year to get an initial visit with a child neurologist so that right there tells me that they are very busy!!! So we know not to expect that the doctor is going to take the time to thoroughly review all of our childs information. We know that he really should do his job...but we are aware of the stone cold facts...he probably didn't!
We informed the doctor that we wanted to see the CT Scan and discuss the results. He showed us different views of Caleb's brain. He explained that a MRI would show a better picture. The right side of Caleb's brain had more looping in it then the left. He explained that you did not want too much or too little of this looping because it could cause such problems as speech delays and weakness in the muscles.
Next, we asked to review the results of the Thyroid test. He pulled up Doctor Megson's results and showed us a number that he could not read. He said the fax came in and they could not read it. Johnny informed the doctor that we had brought the results. We quickly pulled the results out of our organized Acordian folder. Turns out the number he could not see was not something he needed to see anyway. We asked what THEIR results were since he was only viewing Dr. Megson's lab reports. He didn't even know his results were there (again because he had not looked at the file enough). He pulled his results which showed Caleb's results to be abnormally high for the TSH. They did not even have the T3 & T4 results which is equally important in putting the pieces together. At this point, we realized that the original Doctor did not have these numbers and that is why he needed the testing done again. He could not adequately compare his results to Dr. Megson because he did not have all the results. The current Doctor said that since Dr. Megson results are normal and confirm that then it is okay...within normal range. (Who cares that the range is on the high end of normal and not even a..."We'll keep following this in the future." We brought up about another testing result that We had that shows Caleb's fecal lactoferring has abnormally high. When this is elevated it could be in association of imflammatory Bowel Disease such as Ulcerative Colitis or Crohn's Disease. He would not even look at the results...he simply looked at me with a sheepish smile and said this stuff is a scam. It's not regulated by the FDC. He went on to say that he is not telling me a bad thing...this is good news. Caleb is going to develop. At this point, we told him that we understand that is his opinion however, since we changed Caleb's diet and started supplements, removed certain toxins from his environment, we have seen a dramatic improvement in Caleb. He informed me that Caleb will develop and that we will see spikes in his development and that is all that it is. He kept repeating that is a good thing. We again told him that we appreciate his time however until we are proven otherwise, we are going to continue this treatment. There is no reason to get another MRI to show Caleb's brain a little brighter and better when that is only going to tell us a piece of the puzzle. We could clearly see the looping on the CT scan so the MRI would only mean another Anestisia. They won't perform some dramatic surgery to help him develop. According to this doctor, it is what it is and we just have to accept that. We refuse!! We will not!!! He was not their with our child in the last 4 years let alone the last month of progress! We will not accept this as some fluke!!! Yes, I believe that prayers have a lot to do with it...and I also believe that God has led us to Doctor Megson. We can't expect for God to hand us everything. We have to follow his prompting. Even though we know God can performs miracles (he does everyday)...sometimes those miracles are in the little things! When we listen to God's voice and what he is telling us to do...no matter how HARD the circumstance are and follow his prompting...we'll see his face! Circumstances will not control the way we react to the situation. Although it isn't fair that this doctor refuses to document or review any of the information we have, we know that he will provide the grace when life gives us lemons. It would be so easy for us to continue to murmur about how unfair this is. However, we refuse to dwell here long. We know this is a sign to continue with the treatment that is working (Dr. Megson) and quit wasting our time on the things that aren't important. We've been in a circle with Pediatric Neurology numerous times and it is obvious to us that we must make a change. Insanity is doing the same thing over and over and getting the same result (and expecting a change). We are not insane (yet:))
We found that Fecal Lactoferrin (which is the results the doctor did not want to review) is sensitive and specific for detecting inflammation in chronic IBD. This noninvasive test may prove useful in screening for inflammation in patients presenting with abdominal pain and diarrhea. What he claimed was a scam is a legitimate test of screening. We could see him pointing fingers at the diet and the various supplements that he is on but as for the testing...he has no merit. If it weren't for Dr. Megson....we'd never have these tests performed. We count our blessings everyday!
My Grace is sufficient for you, for my power is made perfect in weakness.
2 Corin 12:9
Wednesday, August 18, 2010
Friday, July 23, 2010
EVERYTHING includes EVERYONE working together for the greater good
Wow!!!! I am here to say there is hope for children like Caleb. We are seeing it first hand. Over the past few weeks, we have seen an improvement in Caleb's attention, eye contact, mood, and listening. He is more complient in a changing environment and does not scream when he gets frustrated. Oh...and did I mention that he will sit and let me read to him from start to finish and actually listen...not fiddle with the pages of the book? This may not seem big...but it is BIG to us. Caleb is not anywhere near where his development should be...but in three weeks he has made a dramatic improvement! Praise God!
Now on to different things.....We received the Genetics Report confirming the results of the labwork. They are not able to confirm why Caleb has an piece of chromosone on Chromosone #15. There is speculation but it cannot be assumed since in Science there needs to be evidence to make a diagnosis. When new technologies are introduced, unfortunately many findings have nothing to be compared to and are kinda in limbo until other cases exist.
On the Pediatric Neurolgy side of things (which is where we received our initial diagnosis of PDD), they contacted me to inform me that one of the tests performed on Caleb's blood showed his Thyroid levels were high. The Doctor indicated they would have to recheck it and that it could be his age. He was sending me a perscription in the mail. Instead of me retelling the story all over again, I think my letter below will explain what happened ....
_____________________________________________________________________________________
Dear Doctor (name withheld):
Attached, you will find the lab results conducted by LabCorp. Labcorp provides leading-edge medical laboratory tests and services through a national network of primary clinical laboratories and specialized Centers of Excellence.
As per our discussion a few weeks ago, Caleb’s Thyroid Levels are elevated. At the time, I was under the impression that it was slightly elevated and the recheck was to confirm the results. You informed me that it could explain some of the developmental delays found in my son.
Upon receiving the diagnosis of Pervasive Developmental Disorder, we began the process of researching treatments to improve the quality of Caleb’s life. This research has been a combination of books, articles, and conversations with parents that share similar experiences, along with opinions from other Doctor’s, etc. Through this, we Discovered Dr. Marie Megson. It is not our mission to “replace” the treatment that we receive from Caleb’s current Pediatrician, Neurologists, Geneticists or any other person(s)/facilities(s) involved in his care. As I am sure you are aware, research is being done daily for Autism. It is our hope that Science will discover a Treatment for Autism. Dr. Megson is a Developmental Pediatrician working to help heal these children. She treats children with Autism Spectrum Disorder like treatment for any other medical disorder. They are treated based on their history, family history, and physical exam and lab results. We understand the controversy in the medical community over the Biomedical Approach. Please understand as mentioned already, we are not using this approach as a replacement of current treatments but as a supplementation. We would never put the life of our beautiful son in jeopardy. We believe that ALL the doctors involved in Caleb’s situation should be collaborative in their findings. Each Doctor can have the puzzle piece that make up the larger picture.
Our first visit with Dr. Megson was on June 28th. During this initial visit, she discussed her research and approach. We were also sent to the lab for blood work. We were also sent home with test kits to test stool, urine, and hair. While waiting for the results, we received your call regarding the increased Thyroid Levels. There was no indication that this could be detrimental to Caleb’s health (he could bleed to death)…just a recheck. I received your prescription for the follow-up blood work as well as the Lab Results from Dr. Megson’s testing while I was away on business in Texas. Her findings included Throxine (T4), T3 Uptake, Free Thyroxine Index, and TSH. She noted that the TSH is at the upper limit of normal and we will discuss at the next visit. In the meantime, we removed Gluten and Casein from Caleb’s diet and added supplements. In 3 weeks we are seeing dramatic improvement in his attitude, eye contact, speech, etc.
A copy of these findings from LabCorp is attached. It is our hope that you will review them as you would any other labs findings. Since the additional labs were requested to compare against previously ordered tests, and we have lab work on hand confirming those results, we ask that you review the findings. With all due respect, this lab work should show you the levels of the hormones needed to compare against. Upon review, if you feel it is necessary to have Caleb’s blood drawn again, we will respect that. We are anxious to hear the treatment that you recommend.
Sincerely,
The LaVanish Family
(John, Angie, Caleb and Conner)
_____________________________________________________________________________________
This Doctor treated me as if I was harming my child by refusing to get the blood work that he requested. Instead of reviewing bloodwork that was already in existence to compare against his findings...he blatently treated me as if I refused to get blood work on Caleb...he could bleed to death. Just for the record...I did my research and I could not find anything out there that stated that a "Upper Level of Normal" Thyroid level would mean that a person could bleed to death. I'm not saying that it does not exist...I just did not find anything conterring this information. I did not refuse to do anything, just wanted him to review labwork that I had in my posession that confirmed his findings. Secondly, he treated me as if because Dr. Megson was a "Developmental Pediatrician" that she was less of a Doctor then what he was. He completly changed my intentions...which were to avoid having more blood drawn from Caleb. If he would have took the time to listen he would realize that the reason that I would rather not get more blood being drawn is because it is so traumatic for Caleb. The results are the results no matter how you look at it. If he would just take the time to review the results that Dr. Megson obtained (and even go as far back to check the credentials of LabCorp)and see that indeed they match up to his findings (or don't)...this could save a step. Actually when it comes down to it saving a step could also save TIME which we do not have. This is precious valuable time and I don't feel that it should be wasted on something that is a repeat of something that already exists. Ahhhhh....I could go on and on about this. I struggle with whether it is right for me to be this angry but I know that it is ok to be. It is what I do with that anger that means something. I choose to really explain my heart/motive to this Doctor. In all actuality I recognize this Dr. feels threatened. This Dr. has his own opinion on the way things work and he is very conservative on his views. It is my opinion that a Doctor could be too conservative whereas never making any changes for the good!! Change and acceptence of new approaches (or at least the evaluation of a new approach) is what makes a person grow and I believe this is the same in any field that you are in. A doctor needs to be willing to look at evidence out there for other approaches....and this means involving the people that know their child best...the parents...into the equation. I refuse to not be heard when it comes to my child. I refuse to be treaded on when it comes to his well being. I refuse to be treated as if I'm an imbecile and not smart enough to think on their level! I have watched the indignation of so many parents before me...including my Gram. Some Doctors (not all) disrespect the common person because they are only taking a clinical approach. When they take the time to see my child...day in and day out...then I will completely rely on them but I KNOW that this is impossible. That is why they need to talk to the parents and look at what they are seeing at home!!!!! These Doctors need to work collaborativity with the parents as well as other Doctors or any other persons concerned with the development of with my child. These doctors need to stop blaming the parents and work with the parents for better treatment options. These Doctors need to stop talking in circles and undermining the parents role in all of this!
If the Doctor reviews the findings from LabCorp and determines (and is able to show me proof), that more testing is necessary...I will confer. If he can look upon the results from LabCorp and compare against his original findings...he should have the evidence that he needs to make a reasonable suggestion about his approach. I will then compare his opinions against those of Dr. Megson and other findings that I may derive along the way. I can then take these results and make a decision (or choose to get more information) on what route to take.
This experience has forced me to look into the function of the Thyroid and have a better understanding of how it works. I can now look at the hormone levels and understand the function of the thyroid alongside the Pituatary Gland and Hypothalamus found in the brain. I do have questions regarding the function and I am hoping that I can get the respect well deserved when I ask these questions.
The Thyroid Gland is like a heater. The heat that it produces are the T3 and T4 which sends signals to the brain. The Pituatary Gland is like the Thermostat and it shuts off when it gets too hot from the heat (T3 & T4). The T3 & T4 stop blowing (so to speak)...meaning the production is stopped. Once it is cool enough....The Pituatary (thermostat) sends out TSH which turns the heat back on (Thyroid gland) which produces more heat (T3 & T4) cells. The Hypothalamus is like the person that regulates the heat and controls how hot it gets. When the Doctors review all of these levels...they can often determine the root of it. In other words, they can determine if it is the Thyroid or the Pituatary Gland malfunctioning by the level that each is produced. This is the testing that The Neurogist is seeking. He needs to see the levels. Please pray that he'll look at the results that Dr. Megson pulled on each one of these functions and treat us fairly and dignified when responding with his findings.
Romans 8:28
And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them. (NLT)
Now on to different things.....We received the Genetics Report confirming the results of the labwork. They are not able to confirm why Caleb has an piece of chromosone on Chromosone #15. There is speculation but it cannot be assumed since in Science there needs to be evidence to make a diagnosis. When new technologies are introduced, unfortunately many findings have nothing to be compared to and are kinda in limbo until other cases exist.
On the Pediatric Neurolgy side of things (which is where we received our initial diagnosis of PDD), they contacted me to inform me that one of the tests performed on Caleb's blood showed his Thyroid levels were high. The Doctor indicated they would have to recheck it and that it could be his age. He was sending me a perscription in the mail. Instead of me retelling the story all over again, I think my letter below will explain what happened ....
_____________________________________________________________________________________
Dear Doctor (name withheld):
Attached, you will find the lab results conducted by LabCorp. Labcorp provides leading-edge medical laboratory tests and services through a national network of primary clinical laboratories and specialized Centers of Excellence.
As per our discussion a few weeks ago, Caleb’s Thyroid Levels are elevated. At the time, I was under the impression that it was slightly elevated and the recheck was to confirm the results. You informed me that it could explain some of the developmental delays found in my son.
Upon receiving the diagnosis of Pervasive Developmental Disorder, we began the process of researching treatments to improve the quality of Caleb’s life. This research has been a combination of books, articles, and conversations with parents that share similar experiences, along with opinions from other Doctor’s, etc. Through this, we Discovered Dr. Marie Megson. It is not our mission to “replace” the treatment that we receive from Caleb’s current Pediatrician, Neurologists, Geneticists or any other person(s)/facilities(s) involved in his care. As I am sure you are aware, research is being done daily for Autism. It is our hope that Science will discover a Treatment for Autism. Dr. Megson is a Developmental Pediatrician working to help heal these children. She treats children with Autism Spectrum Disorder like treatment for any other medical disorder. They are treated based on their history, family history, and physical exam and lab results. We understand the controversy in the medical community over the Biomedical Approach. Please understand as mentioned already, we are not using this approach as a replacement of current treatments but as a supplementation. We would never put the life of our beautiful son in jeopardy. We believe that ALL the doctors involved in Caleb’s situation should be collaborative in their findings. Each Doctor can have the puzzle piece that make up the larger picture.
Our first visit with Dr. Megson was on June 28th. During this initial visit, she discussed her research and approach. We were also sent to the lab for blood work. We were also sent home with test kits to test stool, urine, and hair. While waiting for the results, we received your call regarding the increased Thyroid Levels. There was no indication that this could be detrimental to Caleb’s health (he could bleed to death)…just a recheck. I received your prescription for the follow-up blood work as well as the Lab Results from Dr. Megson’s testing while I was away on business in Texas. Her findings included Throxine (T4), T3 Uptake, Free Thyroxine Index, and TSH. She noted that the TSH is at the upper limit of normal and we will discuss at the next visit. In the meantime, we removed Gluten and Casein from Caleb’s diet and added supplements. In 3 weeks we are seeing dramatic improvement in his attitude, eye contact, speech, etc.
A copy of these findings from LabCorp is attached. It is our hope that you will review them as you would any other labs findings. Since the additional labs were requested to compare against previously ordered tests, and we have lab work on hand confirming those results, we ask that you review the findings. With all due respect, this lab work should show you the levels of the hormones needed to compare against. Upon review, if you feel it is necessary to have Caleb’s blood drawn again, we will respect that. We are anxious to hear the treatment that you recommend.
Sincerely,
The LaVanish Family
(John, Angie, Caleb and Conner)
_____________________________________________________________________________________
This Doctor treated me as if I was harming my child by refusing to get the blood work that he requested. Instead of reviewing bloodwork that was already in existence to compare against his findings...he blatently treated me as if I refused to get blood work on Caleb...he could bleed to death. Just for the record...I did my research and I could not find anything out there that stated that a "Upper Level of Normal" Thyroid level would mean that a person could bleed to death. I'm not saying that it does not exist...I just did not find anything conterring this information. I did not refuse to do anything, just wanted him to review labwork that I had in my posession that confirmed his findings. Secondly, he treated me as if because Dr. Megson was a "Developmental Pediatrician" that she was less of a Doctor then what he was. He completly changed my intentions...which were to avoid having more blood drawn from Caleb. If he would have took the time to listen he would realize that the reason that I would rather not get more blood being drawn is because it is so traumatic for Caleb. The results are the results no matter how you look at it. If he would just take the time to review the results that Dr. Megson obtained (and even go as far back to check the credentials of LabCorp)and see that indeed they match up to his findings (or don't)...this could save a step. Actually when it comes down to it saving a step could also save TIME which we do not have. This is precious valuable time and I don't feel that it should be wasted on something that is a repeat of something that already exists. Ahhhhh....I could go on and on about this. I struggle with whether it is right for me to be this angry but I know that it is ok to be. It is what I do with that anger that means something. I choose to really explain my heart/motive to this Doctor. In all actuality I recognize this Dr. feels threatened. This Dr. has his own opinion on the way things work and he is very conservative on his views. It is my opinion that a Doctor could be too conservative whereas never making any changes for the good!! Change and acceptence of new approaches (or at least the evaluation of a new approach) is what makes a person grow and I believe this is the same in any field that you are in. A doctor needs to be willing to look at evidence out there for other approaches....and this means involving the people that know their child best...the parents...into the equation. I refuse to not be heard when it comes to my child. I refuse to be treaded on when it comes to his well being. I refuse to be treated as if I'm an imbecile and not smart enough to think on their level! I have watched the indignation of so many parents before me...including my Gram. Some Doctors (not all) disrespect the common person because they are only taking a clinical approach. When they take the time to see my child...day in and day out...then I will completely rely on them but I KNOW that this is impossible. That is why they need to talk to the parents and look at what they are seeing at home!!!!! These Doctors need to work collaborativity with the parents as well as other Doctors or any other persons concerned with the development of with my child. These doctors need to stop blaming the parents and work with the parents for better treatment options. These Doctors need to stop talking in circles and undermining the parents role in all of this!
If the Doctor reviews the findings from LabCorp and determines (and is able to show me proof), that more testing is necessary...I will confer. If he can look upon the results from LabCorp and compare against his original findings...he should have the evidence that he needs to make a reasonable suggestion about his approach. I will then compare his opinions against those of Dr. Megson and other findings that I may derive along the way. I can then take these results and make a decision (or choose to get more information) on what route to take.
This experience has forced me to look into the function of the Thyroid and have a better understanding of how it works. I can now look at the hormone levels and understand the function of the thyroid alongside the Pituatary Gland and Hypothalamus found in the brain. I do have questions regarding the function and I am hoping that I can get the respect well deserved when I ask these questions.
The Thyroid Gland is like a heater. The heat that it produces are the T3 and T4 which sends signals to the brain. The Pituatary Gland is like the Thermostat and it shuts off when it gets too hot from the heat (T3 & T4). The T3 & T4 stop blowing (so to speak)...meaning the production is stopped. Once it is cool enough....The Pituatary (thermostat) sends out TSH which turns the heat back on (Thyroid gland) which produces more heat (T3 & T4) cells. The Hypothalamus is like the person that regulates the heat and controls how hot it gets. When the Doctors review all of these levels...they can often determine the root of it. In other words, they can determine if it is the Thyroid or the Pituatary Gland malfunctioning by the level that each is produced. This is the testing that The Neurogist is seeking. He needs to see the levels. Please pray that he'll look at the results that Dr. Megson pulled on each one of these functions and treat us fairly and dignified when responding with his findings.
Romans 8:28
And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them. (NLT)
Wednesday, July 7, 2010
Visit with Dr. Megson and Treatment
It's been awhile since my last post. We have had a busy couple of weeks with Caleb's new treatment and of course the 4th of July was in between it all.
We met Dr. Megson a little over 1 week ago. The thing that stands out most in my mind was that she genuinely cares about making these children well. I believe her compiled research will ultimately help Caleb. Not only did she give us hope for the future...but she helped us to understand some of Caleb's tendencies. Here are some of the things I found interesting....
**Because of the lacking of certain nutrients in the body...the vision field is impaired. This means that instead of seeing like you and I in 3D....he sees thing in 2D. This information is crucial....it helps us to be better prepared for his classroom time. If a teacher is outside his vision field ....he may not be able to focus on what the teacher is saying. He needs a more direct...face to face approach. Also, this may be why TV can be such an addiction to these children...it is their world because it is also in 2D. This also may be why he can set for hours and push cars. When the car is close to his face....it is in his focus (color and all)....when he pulls it away it leaves his focus. I could only imagine how wild that must be!!! She said in many cases....the moms have night vision problems (which I have).
**It is possible that the Antibiotics that Caleb had and or medications administered during his surgery caused some of this. This and many other factors may have led to the damage to the gut. This damage can be repaired with diet and nutritional supplements (vitamins).
**Many of these children like pressure because of the sensory stimultation. Many of these children like to rough house and wrestle because of the feeling they get from it.
We purchased a book written by a mom that was treated by Dr. Megson called, "The Biomanagement Field Guide for Autism Spectrum Disorder" by Allison Trotter. Since we got so much information in the time that we talked to Dr. Megson...it was hard to write it all down. This book explains everything from a parents perspective and gives tips on keeping it all organized.
One of my favorite chapters in the book is called the Butterfly Effect. Many Autoimmune Diseases and Inflammatory diseases have been linked to an increased risk factor for autism. Pair that up with the child's personal health history...including intestinal insults, envioronmental insults, and viral insults....and they represent what may have gone wrong and where it started. The key is to brainstorm all of this information then put it in chronological order. Also take into consideration and current health problems and lifestyle changes (introducing solid foods, moving, etc. Include such events as "shots", etc.
On December 11, 2006 Caleb had his surgery. He was given doses of morphine, antibiotics, etc. Put all that together with some of the environmental hits in our home (pest control, cleaning products, Foods (certain attitudes and proteins not broken down), and vaccintation....one of which was only a few weeks after the surgery on December 28, 2006.
Some of these children are already predisposed to some of these symptoms and then you add many other environmental factors into the mix....and they are heightened. We are just putting too many chemicals and foods into the body that was not meant for human consumption. It is almost scary when you start reading what we are exposed to. It wouldn't be any wonder that the rate of autism has increased drastically. When is this going to stop? It took this to open my eyes. My hope is that other parents will not wait until they are going through a similar experience to research these factors. I wish that every parent would research the vaccines that are being put into our children's body. It is not that I am anti-vaccine...but just safer. Vaccinations can be made safer and spread out over time!!! There are also things that can be tested for to see if the child is immune. Dr. Megson takes this very stance....and recommends reading, "What your Pediatrician won't tell you about Childhood Vaccinations" by Stephanie Cave, MD".
I can tell you that I am a bargain shopper...and have never given it much thought about what I eat. I've never done organic because of the price. I have always cleaned with pinesol, etc because I always felt like it wasn't clean unless it smelled frsh. I never gave much thought to how much nutrition can play a role on the body and brain. I always fed my children healthy (or so I thought)and they do not eat a lot of junk food. I never read labels, etc. It was not until I had a child with autism that I realized the toxins that are out there. Even a bottle of Flintstone Vitamins has a bunch of junk that does not belong in a childs body....The very first ingredient list is Succrose and it goes on to list artifical flavors, more sugar, etc.
This week...we started 4th of July with a bang. I like to think of it as our "new year". We started the Gluten Free, Casein Free diet...the day after 4th of July. We also started a regimen of vitamins every 5 days. As a family, we are all eating healthier!
Yesterday, I got to take a urine sample and have also sent a hair sample to a lab. My last task with that (so far) is a fecal sample. I am not looking forward to that one!!! At least he is still in a diaper and I don't have to do what my friend has to do. She literally has to chase him around with a french fry box and ask him if he has to go!!! The things we do for our children:0) It is all worth it though!!!
3 days into the Cod Liver Oil (before we started the diet)....Caleb had a full blown conversation with me and Johnny. He seems to be a bit calmer too. I can't say that it is working yet or if it is all the prayer that is going out for him. Either way, all that matters is we are seeing some improvement and we have hope that as we start introducing the vitamins into his diet...that his intestines will heal so that we do not have to remain on the diet forever.
As for the diet....I bought bread yesterday and it was over $7.00 but overall it wasn't too bad. I plan on getting a bread machine so I can experiment with some different breads and not spend so much. There are so many great products out there that are Gluten Free/Casein Free that we eat on a daily basis so I was able to incorporate that into our mealtimes with a few minor adjustments. The hardest part is no bread, pasta or cheese. There are some great alternatives and substitutes out there and the great part is that Caleb has not developed a preference yet. It was a little easier for me in that aspect because he doesn't really care if the spaghetti is Semolina or Rice. He just knows it is spaghetti and will eat it. We hope he keeps it up! We tasted a few of the products too and they are actually not too bad!
I know that God has led us to where we are at with Caleb. I really felt his presence on the first couple of pages of Allison Trotters book. She mentions that she is a christian. She said that although her personal faith is not expressed in the book...you can feel the power on every page. Hallelujah!!! I know He will use this for the greater good and if we remain faithful and steadfast....God will move mountains!!!! I hope that this Blog helps at least one person to keep going. I know it is a long road....but you don't have to do it alone!!!
We met Dr. Megson a little over 1 week ago. The thing that stands out most in my mind was that she genuinely cares about making these children well. I believe her compiled research will ultimately help Caleb. Not only did she give us hope for the future...but she helped us to understand some of Caleb's tendencies. Here are some of the things I found interesting....
**Because of the lacking of certain nutrients in the body...the vision field is impaired. This means that instead of seeing like you and I in 3D....he sees thing in 2D. This information is crucial....it helps us to be better prepared for his classroom time. If a teacher is outside his vision field ....he may not be able to focus on what the teacher is saying. He needs a more direct...face to face approach. Also, this may be why TV can be such an addiction to these children...it is their world because it is also in 2D. This also may be why he can set for hours and push cars. When the car is close to his face....it is in his focus (color and all)....when he pulls it away it leaves his focus. I could only imagine how wild that must be!!! She said in many cases....the moms have night vision problems (which I have).
**It is possible that the Antibiotics that Caleb had and or medications administered during his surgery caused some of this. This and many other factors may have led to the damage to the gut. This damage can be repaired with diet and nutritional supplements (vitamins).
**Many of these children like pressure because of the sensory stimultation. Many of these children like to rough house and wrestle because of the feeling they get from it.
We purchased a book written by a mom that was treated by Dr. Megson called, "The Biomanagement Field Guide for Autism Spectrum Disorder" by Allison Trotter. Since we got so much information in the time that we talked to Dr. Megson...it was hard to write it all down. This book explains everything from a parents perspective and gives tips on keeping it all organized.
One of my favorite chapters in the book is called the Butterfly Effect. Many Autoimmune Diseases and Inflammatory diseases have been linked to an increased risk factor for autism. Pair that up with the child's personal health history...including intestinal insults, envioronmental insults, and viral insults....and they represent what may have gone wrong and where it started. The key is to brainstorm all of this information then put it in chronological order. Also take into consideration and current health problems and lifestyle changes (introducing solid foods, moving, etc. Include such events as "shots", etc.
On December 11, 2006 Caleb had his surgery. He was given doses of morphine, antibiotics, etc. Put all that together with some of the environmental hits in our home (pest control, cleaning products, Foods (certain attitudes and proteins not broken down), and vaccintation....one of which was only a few weeks after the surgery on December 28, 2006.
Some of these children are already predisposed to some of these symptoms and then you add many other environmental factors into the mix....and they are heightened. We are just putting too many chemicals and foods into the body that was not meant for human consumption. It is almost scary when you start reading what we are exposed to. It wouldn't be any wonder that the rate of autism has increased drastically. When is this going to stop? It took this to open my eyes. My hope is that other parents will not wait until they are going through a similar experience to research these factors. I wish that every parent would research the vaccines that are being put into our children's body. It is not that I am anti-vaccine...but just safer. Vaccinations can be made safer and spread out over time!!! There are also things that can be tested for to see if the child is immune. Dr. Megson takes this very stance....and recommends reading, "What your Pediatrician won't tell you about Childhood Vaccinations" by Stephanie Cave, MD".
I can tell you that I am a bargain shopper...and have never given it much thought about what I eat. I've never done organic because of the price. I have always cleaned with pinesol, etc because I always felt like it wasn't clean unless it smelled frsh. I never gave much thought to how much nutrition can play a role on the body and brain. I always fed my children healthy (or so I thought)and they do not eat a lot of junk food. I never read labels, etc. It was not until I had a child with autism that I realized the toxins that are out there. Even a bottle of Flintstone Vitamins has a bunch of junk that does not belong in a childs body....The very first ingredient list is Succrose and it goes on to list artifical flavors, more sugar, etc.
This week...we started 4th of July with a bang. I like to think of it as our "new year". We started the Gluten Free, Casein Free diet...the day after 4th of July. We also started a regimen of vitamins every 5 days. As a family, we are all eating healthier!
Yesterday, I got to take a urine sample and have also sent a hair sample to a lab. My last task with that (so far) is a fecal sample. I am not looking forward to that one!!! At least he is still in a diaper and I don't have to do what my friend has to do. She literally has to chase him around with a french fry box and ask him if he has to go!!! The things we do for our children:0) It is all worth it though!!!
3 days into the Cod Liver Oil (before we started the diet)....Caleb had a full blown conversation with me and Johnny. He seems to be a bit calmer too. I can't say that it is working yet or if it is all the prayer that is going out for him. Either way, all that matters is we are seeing some improvement and we have hope that as we start introducing the vitamins into his diet...that his intestines will heal so that we do not have to remain on the diet forever.
As for the diet....I bought bread yesterday and it was over $7.00 but overall it wasn't too bad. I plan on getting a bread machine so I can experiment with some different breads and not spend so much. There are so many great products out there that are Gluten Free/Casein Free that we eat on a daily basis so I was able to incorporate that into our mealtimes with a few minor adjustments. The hardest part is no bread, pasta or cheese. There are some great alternatives and substitutes out there and the great part is that Caleb has not developed a preference yet. It was a little easier for me in that aspect because he doesn't really care if the spaghetti is Semolina or Rice. He just knows it is spaghetti and will eat it. We hope he keeps it up! We tasted a few of the products too and they are actually not too bad!
I know that God has led us to where we are at with Caleb. I really felt his presence on the first couple of pages of Allison Trotters book. She mentions that she is a christian. She said that although her personal faith is not expressed in the book...you can feel the power on every page. Hallelujah!!! I know He will use this for the greater good and if we remain faithful and steadfast....God will move mountains!!!! I hope that this Blog helps at least one person to keep going. I know it is a long road....but you don't have to do it alone!!!
Thursday, June 24, 2010
Hope
"We are not just what we eat; we are what we eat, digest, absorb, and utilize" (from the Kid-Friendly ADHD & Autism Cookbook)
Wow...it is hard to believe that Monday's BIG day! We are going to see Dr. Megson and we have so much hope that she will be able to help us get Caleb on track. The way I look at it (and I may have high hopes)...we have 1 year to possibly get Caleb into regular Kindergarden. I have my hopes set that one year from now...we'll look back and say....Look how far we've come!!!!
Over the past few months, I have been trying to really educate myself with as much information as I can about Autism. I have come along way since the day that my friend Lisa explained to me that PDD was on the Spectrum. I have been reading books, listening to DAN (Defeat Autism Now) Podcasts, talking to other parents, and observing Caleb. We are also hoping to go to a few of the sessions at the 2010 National Autism Conference in State College, PA. As I've heard Joyce Meyer say, "I'm not where I should be...but thank God I'm not where I used to be." This education will enable us to help Caleb function in a typical world.
I am really fascinated that diet can play an important role in helping children on the Spectrum. This has provided a dose of hope! From what I understand....the Amino Acids are like letters in a word. The word that they make up are called peptides. Since many of these children have problems with their digestion, such as not enough digestive enzymes and/or leakiness of the intestinal lining...some of the words (peptides) are getting into the bloodstream. This causes problems in the body and potentially short-circuits brain functioning. Certain foods are harder to break down..Glutens, Casein, Soy, etc.
Dr. Megson will be conducting a Peptide test on Caleb to determine if Caleb has a leaky gut. This test will help us to determine if this diet...and which form of this diet is necessary. Many of these children are addicted to these type(s) of foods since they create Opiate-like effects. Caleb's favorite foods are Bread, Bread, Bread, Pasta. I have hope that this will help Caleb. I was also reading where lack of Zinc can cause depletion in Vitamin A which is the most notable symptom is eye contact. Another symptom is limited taste which could cause these children to eat something gross....like play dough. Magnesium depletion causes low muscle tone. Caleb takes Occupational and Physical therapy to help with the muscle tone on the right side of his body. There is hope, there is hope, there is hope!
I am also going to ask Dr. Megson if the intestinal problems Caleb had as a baby...could be linked too this.
To replace missing nutrients..the Doctor might recommend Cod Liver Oil (to replace Vitamin A)and Zinc. Certain things in the diet...dark green veggies...can help add back the magnesium or other important nutrients that are depleted.
Of course, I am looking into this with an open-mind. This diet may or may not work. It doesn't hurt to try it!!! If anything, Caleb will be eating healthier since this diet goes back to the early time where humans ate fish, meats, fruits, vegetables, and nuts and seeds. They did not consume milk, grains, beans, or potatoes because milk products were not available and other foods could not be consumed because they were raw and could cause severe symptoms. Eventually cooking and domestication brought those foods into the diet. Milk is not as healthy as our culture makes it sound yet it is in so many of the products that we consume on a daily basis. So many things aren't healthy for us to consume. Artificial Sweeter--contained in sodas -are the worse because they impair regulation of calorie intake resulting in overeating, etc. They can actually cause the opposite to happen...hmmm. They also deplete important nutrients in the body...opposite of what electrolye drinks like gatorade do. I'm not sure I even want to talk about hydrogenated oils which are basically mutated plastics that cause neurological problems, etc. One last important thing that I learned is that Wheat Flour is not really as healthy as it seems (actually white flour is not good either). Whole grains actually release sugars slowly into the body but when it is mashed down...it can cause blood glucose to raise much faster.
So if we haven't gained anything out of all this...we've gained the knowledge to eat better and maybe live longer because we are healthier.
Wow...it is hard to believe that Monday's BIG day! We are going to see Dr. Megson and we have so much hope that she will be able to help us get Caleb on track. The way I look at it (and I may have high hopes)...we have 1 year to possibly get Caleb into regular Kindergarden. I have my hopes set that one year from now...we'll look back and say....Look how far we've come!!!!
Over the past few months, I have been trying to really educate myself with as much information as I can about Autism. I have come along way since the day that my friend Lisa explained to me that PDD was on the Spectrum. I have been reading books, listening to DAN (Defeat Autism Now) Podcasts, talking to other parents, and observing Caleb. We are also hoping to go to a few of the sessions at the 2010 National Autism Conference in State College, PA. As I've heard Joyce Meyer say, "I'm not where I should be...but thank God I'm not where I used to be." This education will enable us to help Caleb function in a typical world.
I am really fascinated that diet can play an important role in helping children on the Spectrum. This has provided a dose of hope! From what I understand....the Amino Acids are like letters in a word. The word that they make up are called peptides. Since many of these children have problems with their digestion, such as not enough digestive enzymes and/or leakiness of the intestinal lining...some of the words (peptides) are getting into the bloodstream. This causes problems in the body and potentially short-circuits brain functioning. Certain foods are harder to break down..Glutens, Casein, Soy, etc.
Dr. Megson will be conducting a Peptide test on Caleb to determine if Caleb has a leaky gut. This test will help us to determine if this diet...and which form of this diet is necessary. Many of these children are addicted to these type(s) of foods since they create Opiate-like effects. Caleb's favorite foods are Bread, Bread, Bread, Pasta. I have hope that this will help Caleb. I was also reading where lack of Zinc can cause depletion in Vitamin A which is the most notable symptom is eye contact. Another symptom is limited taste which could cause these children to eat something gross....like play dough. Magnesium depletion causes low muscle tone. Caleb takes Occupational and Physical therapy to help with the muscle tone on the right side of his body. There is hope, there is hope, there is hope!
I am also going to ask Dr. Megson if the intestinal problems Caleb had as a baby...could be linked too this.
To replace missing nutrients..the Doctor might recommend Cod Liver Oil (to replace Vitamin A)and Zinc. Certain things in the diet...dark green veggies...can help add back the magnesium or other important nutrients that are depleted.
Of course, I am looking into this with an open-mind. This diet may or may not work. It doesn't hurt to try it!!! If anything, Caleb will be eating healthier since this diet goes back to the early time where humans ate fish, meats, fruits, vegetables, and nuts and seeds. They did not consume milk, grains, beans, or potatoes because milk products were not available and other foods could not be consumed because they were raw and could cause severe symptoms. Eventually cooking and domestication brought those foods into the diet. Milk is not as healthy as our culture makes it sound yet it is in so many of the products that we consume on a daily basis. So many things aren't healthy for us to consume. Artificial Sweeter--contained in sodas -are the worse because they impair regulation of calorie intake resulting in overeating, etc. They can actually cause the opposite to happen...hmmm. They also deplete important nutrients in the body...opposite of what electrolye drinks like gatorade do. I'm not sure I even want to talk about hydrogenated oils which are basically mutated plastics that cause neurological problems, etc. One last important thing that I learned is that Wheat Flour is not really as healthy as it seems (actually white flour is not good either). Whole grains actually release sugars slowly into the body but when it is mashed down...it can cause blood glucose to raise much faster.
So if we haven't gained anything out of all this...we've gained the knowledge to eat better and maybe live longer because we are healthier.
Tuesday, June 15, 2010
Leaving a Legacy
As I look back over my life, two people that have made an impact on my life are my gram and pap. Not only did they give me my mom....but their resilience through lifes tough waters completely amazes me! How could they ever know that their legacy would make a big impact on my future?
The untimely passing of their daughter Stacey Lou, a young teenage mom with a lot of promise. Through the sadness, they still managed to raise her son, Derek. Derek's father bolted shorty after Stacey's death. Derek was born with some complications. He was developmentaly behind and through out his childhood my grandparents fought to get him the help that he needed. This was during the time that society's idea of autism was "Rainman". Derek final diagnosis was "mental". I can tell you that Derek is NOT mental in any way, shape, or form!! MENTAL is not someone who at a very young age..knew the words and artist of almost any country song. MENTAL is not someone that is very organized and knows where everything is. MENTAL is not someone that can show love and hurt at the funeral of his "neice" Shana's funeral. When I picture mental I picture something so much different then Derek!! Every sign about Derek points to Autism. I can remember the difficulty he had with Math problems, etc. He had a low lack of concentration. He would not and still does not eat a lot of meat. I would imagine it has something to do with the texture. He would only wear certain types of clothing and would pull his socks up to his knees and drive my grandma nuts!!! Like Caleb, Derek was fascinated with push his toy cars. He has difficulty in certain social situations and can get frustrated at change.
How could they know that all the injustices that they received (the delays in a diagnosis..the school system that felt Derek was well off where he was, the challanges of medicine changes,etc)..was not done in vain?
My grandparents journey has imprinted the future for Caleb. Through all of this we are that much further along with our journey. They say the reason we should learn about History is because it can determine the future. You can look back and see the things that worked or maybe didn't and learn from those experiences. we will take those experiences and use them to help Caleb.
Please keep your prayers on Caleb....they are being heard. In the past few weeks, we have seem dramatic improvement in his speech and language. He is trying to tell us things more and his tantrums are very mild. Lately, he has been very loving. He LOVES to give hugs and kisses!!! I can see the joy radiating from him!!!
The end of this month is our trip to Virginia with Caleb. We are so excited about going to the Baltimore Aquarium the day before our visit to Dr. Megson. We have hope that Dr. Megson will help us get on a path for Caleb that will help him. We are still waiting to hear on the Fragile X test as well as the determination of whether the genetic defect is maternal or paternal. I expect to be receiving a call about that within the next week.
Deuteronomy 6:4-9
Hear, O Israel: The LORD our God, the LORD is one. Love the LORD your God with all your heart and with all your soul and with all your strength. These commandments that I give you today are to be upon your hearts. Impress them on your children. Talk about them when you sit at home and when you walk along the road, when you lie down and when you get up. Tie them as symbols on your hands and bind them on your foreheads. Write them on the doorframes of your houses and on your gates.
The untimely passing of their daughter Stacey Lou, a young teenage mom with a lot of promise. Through the sadness, they still managed to raise her son, Derek. Derek's father bolted shorty after Stacey's death. Derek was born with some complications. He was developmentaly behind and through out his childhood my grandparents fought to get him the help that he needed. This was during the time that society's idea of autism was "Rainman". Derek final diagnosis was "mental". I can tell you that Derek is NOT mental in any way, shape, or form!! MENTAL is not someone who at a very young age..knew the words and artist of almost any country song. MENTAL is not someone that is very organized and knows where everything is. MENTAL is not someone that can show love and hurt at the funeral of his "neice" Shana's funeral. When I picture mental I picture something so much different then Derek!! Every sign about Derek points to Autism. I can remember the difficulty he had with Math problems, etc. He had a low lack of concentration. He would not and still does not eat a lot of meat. I would imagine it has something to do with the texture. He would only wear certain types of clothing and would pull his socks up to his knees and drive my grandma nuts!!! Like Caleb, Derek was fascinated with push his toy cars. He has difficulty in certain social situations and can get frustrated at change.
How could they know that all the injustices that they received (the delays in a diagnosis..the school system that felt Derek was well off where he was, the challanges of medicine changes,etc)..was not done in vain?
My grandparents journey has imprinted the future for Caleb. Through all of this we are that much further along with our journey. They say the reason we should learn about History is because it can determine the future. You can look back and see the things that worked or maybe didn't and learn from those experiences. we will take those experiences and use them to help Caleb.
Please keep your prayers on Caleb....they are being heard. In the past few weeks, we have seem dramatic improvement in his speech and language. He is trying to tell us things more and his tantrums are very mild. Lately, he has been very loving. He LOVES to give hugs and kisses!!! I can see the joy radiating from him!!!
The end of this month is our trip to Virginia with Caleb. We are so excited about going to the Baltimore Aquarium the day before our visit to Dr. Megson. We have hope that Dr. Megson will help us get on a path for Caleb that will help him. We are still waiting to hear on the Fragile X test as well as the determination of whether the genetic defect is maternal or paternal. I expect to be receiving a call about that within the next week.
Deuteronomy 6:4-9
Hear, O Israel: The LORD our God, the LORD is one. Love the LORD your God with all your heart and with all your soul and with all your strength. These commandments that I give you today are to be upon your hearts. Impress them on your children. Talk about them when you sit at home and when you walk along the road, when you lie down and when you get up. Tie them as symbols on your hands and bind them on your foreheads. Write them on the doorframes of your houses and on your gates.
Wednesday, June 2, 2010
"If for some reason Autism had been erraticated from the face of the Earth...Men would still be socializing in front of a wood fire at the entrance of a cave"
Temple Grandin
Now I don't buy into the whole caveman concept but I do agree with Temple's suggestion that if autism was completely removed from the face of the earth....many of our great ideas in the world would eliminate. Have you all seen the way that Miss Gradin thinks, draws, designs? I'm not saying that all autistic children are creative...but I do know that there is always something they are really good at or really like and if we encourage them (as any other child)....they can excel beyond what we have ever imagined!!!
Did you ever wonder if you could see inside your childs mind...what are they thinking? I find myself doing this so often. Somehow when your child is not so vocal....and you know they are retreating somewhere in their mind....you really have to consider how much he/she is taking in. I am reminded of an old nursery rhyme...
A wise old owl lived in an oak
The more he saw the less he spoke
The less he spoke the more he heard.
Why can't we all be like that wise old bird?
As I look back over history....children with disabilities were not always accepted into society. It is hard for me to imagine the idea of institutionalizing a child because they lacked some type of ability. The fact that Caleb has a Speech delay does not mean he cannot function as a child that does not have autism.
You take the blind man for instance....he may not be able to see but all of his other senses are in tune. Infact, I would not be afraid to bet that his sense of smell, hearing, touch, and taste are so much more acute then someone with all five senses. He learns to function...maybe by the use of braille or a seeing eye dog. He uses his other senses to guide him. Same thing can happen for an autistic child...Autistic children and children without the disorder will use the same part of their brains for perception....but the part that brings everything together is out of sync. Is there a way to help Caleb bring things together more easily...maybe be able to focus.
Instead of being preoccupied with the things my children can't do....i want to focus more on the things they CAN do. I want to encourage them to be all they can be and if there is something holding them back.....overcome that obstacle. Maybe there is a different way to "sync" with Caleb's brain then that of the typical child. Maybe he's just like the Macintosh computer...just programed different but when his language is used....WOW:)
Have you ever heard of the 80/20 Rule or the Pareto Principle? This principle took into account that 20% of something is always responsible for 80% of the results. If I spend all my time focused on what Caleb CAN'T do YET instead of focusing on what he CAN do.....then he'll be discouraged and most likely all the things he is excelling at will soon fall behind.
In a few weeks we are going to see Dr Megson. Will she have all the answers? Probably not...but I do maintain hope that she will help us see things through his eyes. Are there things we can do better to help him gain focus? Is there really a way we can change his diet to help with this? Are there other avenues we could be taking? It has to be worth something knowing that she is focused on the autistic child. All the Doctors we have seen up until this point have not specialized in this area!!! I'm not saying that they did not have knowledge but I really believe when you have someone that devotes their life to a certain area...that has to count for something!!! You see, we want to make things better for Caleb...so his world can be less frustrating and more joyful.
Caleb is fixated on any kind of riding equipment...cars, riding lawnmower, four-wheeler, dirt bike. He LOVES riding with his dad on the various "toys" that we have around here. Did I mention the Moped? At first, I was nervous about his dad taking him for rides....but then I realized that Caleb really LOVES to do this with his daddy and I can tell that daddy enjoys it too!!! I could let my "fear" of what "could" happen discourage Caleb and have him withdraw even further into himself or I can learn to overcome some of my fear and encourage him. I could let my "fear" that he might be like this for the rest of his life...shelter him and stop him from doing things because he may not be "skilled" in a certain area. I think not!!!
In Mitch Albom's book, For One More Day...the main character Chick goes into the library to get a book. The librarian tells him the book is to hard for him to read and makes him pick another book. When he goes out to the car his mom questions why he got the same book they read before. Chick tells her he picked another book out and the librarian told him it was to hard for him to read. The mother marched him back into the library and she told the library to NEVER TELL A CHILD THAT SOMETHING IS TOO HARD FOR HIM. They walked out of there with the book. This is how we all need to fight for our children. We should NEVER let ANYONE EVER TELL US OR OUR CHILDREN THEY CAN'T DO SOMETHING! Where there is a will...there is a way!
Do not worry about tomorrow, for tomorrow will bring worries of its own
Matthew 6:34
Temple Grandin
Now I don't buy into the whole caveman concept but I do agree with Temple's suggestion that if autism was completely removed from the face of the earth....many of our great ideas in the world would eliminate. Have you all seen the way that Miss Gradin thinks, draws, designs? I'm not saying that all autistic children are creative...but I do know that there is always something they are really good at or really like and if we encourage them (as any other child)....they can excel beyond what we have ever imagined!!!
Did you ever wonder if you could see inside your childs mind...what are they thinking? I find myself doing this so often. Somehow when your child is not so vocal....and you know they are retreating somewhere in their mind....you really have to consider how much he/she is taking in. I am reminded of an old nursery rhyme...
A wise old owl lived in an oak
The more he saw the less he spoke
The less he spoke the more he heard.
Why can't we all be like that wise old bird?
As I look back over history....children with disabilities were not always accepted into society. It is hard for me to imagine the idea of institutionalizing a child because they lacked some type of ability. The fact that Caleb has a Speech delay does not mean he cannot function as a child that does not have autism.
You take the blind man for instance....he may not be able to see but all of his other senses are in tune. Infact, I would not be afraid to bet that his sense of smell, hearing, touch, and taste are so much more acute then someone with all five senses. He learns to function...maybe by the use of braille or a seeing eye dog. He uses his other senses to guide him. Same thing can happen for an autistic child...Autistic children and children without the disorder will use the same part of their brains for perception....but the part that brings everything together is out of sync. Is there a way to help Caleb bring things together more easily...maybe be able to focus.
Instead of being preoccupied with the things my children can't do....i want to focus more on the things they CAN do. I want to encourage them to be all they can be and if there is something holding them back.....overcome that obstacle. Maybe there is a different way to "sync" with Caleb's brain then that of the typical child. Maybe he's just like the Macintosh computer...just programed different but when his language is used....WOW:)
Have you ever heard of the 80/20 Rule or the Pareto Principle? This principle took into account that 20% of something is always responsible for 80% of the results. If I spend all my time focused on what Caleb CAN'T do YET instead of focusing on what he CAN do.....then he'll be discouraged and most likely all the things he is excelling at will soon fall behind.
In a few weeks we are going to see Dr Megson. Will she have all the answers? Probably not...but I do maintain hope that she will help us see things through his eyes. Are there things we can do better to help him gain focus? Is there really a way we can change his diet to help with this? Are there other avenues we could be taking? It has to be worth something knowing that she is focused on the autistic child. All the Doctors we have seen up until this point have not specialized in this area!!! I'm not saying that they did not have knowledge but I really believe when you have someone that devotes their life to a certain area...that has to count for something!!! You see, we want to make things better for Caleb...so his world can be less frustrating and more joyful.
Caleb is fixated on any kind of riding equipment...cars, riding lawnmower, four-wheeler, dirt bike. He LOVES riding with his dad on the various "toys" that we have around here. Did I mention the Moped? At first, I was nervous about his dad taking him for rides....but then I realized that Caleb really LOVES to do this with his daddy and I can tell that daddy enjoys it too!!! I could let my "fear" of what "could" happen discourage Caleb and have him withdraw even further into himself or I can learn to overcome some of my fear and encourage him. I could let my "fear" that he might be like this for the rest of his life...shelter him and stop him from doing things because he may not be "skilled" in a certain area. I think not!!!
In Mitch Albom's book, For One More Day...the main character Chick goes into the library to get a book. The librarian tells him the book is to hard for him to read and makes him pick another book. When he goes out to the car his mom questions why he got the same book they read before. Chick tells her he picked another book out and the librarian told him it was to hard for him to read. The mother marched him back into the library and she told the library to NEVER TELL A CHILD THAT SOMETHING IS TOO HARD FOR HIM. They walked out of there with the book. This is how we all need to fight for our children. We should NEVER let ANYONE EVER TELL US OR OUR CHILDREN THEY CAN'T DO SOMETHING! Where there is a will...there is a way!
Do not worry about tomorrow, for tomorrow will bring worries of its own
Matthew 6:34
Wednesday, May 26, 2010
Caleb's Journey
Hi! We are the LaVanish Family. We are a family of four, myself (Angie), my loving husband (Johnny), Caleb and Conner!! We are so blessed !!!
Caleb was born on June 23, 2006... a perfect, beautiful baby boy! He's our first born...our pride and joy! At 6 months old...right before Christmas...he developed intussusception --a medical condition in which a part of the intestine has invaginated into another section of intestine, similar to the way in which the parts of a collapsible telescope slide into one another. This resulted in an obstruction. Any parent that has ever gone through something like this....knows the fear that goes into that moment. I could have lost my child and I thank God for him everyday!!!!
Like any proceedure, he had to recover. I assumed that this was why he was behind on most of the beginning milestones. With each and every doctor visit, he fell further and further behind. We kept hearing the same thing from parents that we talked to. You can't compare, no child is the same, he'll catch up. I knew in my heart that there was more to this.
At the time, I was working a full time job at an insurance agency and worked part-time teaching woman to dress for success with Premier Designs Jewelry while my son was enrolled in daycare.
After a loving conversation with my Mother-In-Law, Kellie, she confirmed what I had been feeling. She said that because she obviously had children of her own plus she had the experience working in a daycare with children, she noticed something was "different" about Caleb. She couldn't put her finger on it.
The next day, I asked the daycare what their thoughts and needless to say the response was, "We were afraid to tell you because we thought you would get mad." Apparently it was their experience in the past that parents would get mad when they told them their was something wrong with their kids. This really hurt me and I immediately pulled him out of the daycare and onto another. Still we found that it didn't matter how strong the daycare was....he needed more direct attention. A ratio of a few workers to several kids was not going to cut it for a boy that needed more attention. It is my opinion that he is just as smart as all the other children...it is just a different way that he needs to learn.
Caleb is/was not a bad kid. Infact, we were told by so many that he was so calm compared to most. He could sit forever and watch a Baby Einsteen movie and when it would shut off he would get really upset. He didn't make a lot of eye contact and it was so hard to get him on task. He loses focus often. One of the early signs was fascination with buckeling things. He would sit and work with it until he would get it together and once it clasped...he would want to do it again. Over and over and over!! He lines cars up over and over again and will push them back and forth and he is engulfed in watching the wheels go back and forth.
Then there are the meltdowns!!! As I mentioned, Caleb is pretty calm with his behavior. However, when we would get into situations where his surroundings involved a lot of people...he would get overwhelmed. If it was a dinner with family, we could not get him to eat or cooperate with us. Obviously, we would get advice from everyone on how to "correct" him. It has even been said that we just need to spank his butt more and he would act better. If they only knew that spanking a child that has no concept of why he is being spanked or even trying to put him in time out. I've even tried to ignore a tantrum completely. What I have found is he loses a lot of focus and if we could just get his attention...I truly believe the meltdowns would be less!!! Even a simple task of trying to sit down with him and show him how to something is hard. He'll try to do something but usually it only lasts for a few moments then he is more interested in doing his thing.
It took me along time to get past some of the hurtful things that people did not even realize that they did. It is my faith in God that has started this process of healing my heart and teaching me how to forgive people and most importantly push to get the answers that we need to help him. We just had to get it out of our heads that this is in something that we did.
Our son, Conner Matthew was born on June 7, 2009. In the past year, I have got to watch him grow and develop. Already at this age, I am noticing a BIG difference in his development. He makes eye contact, is walking, and even saying a few words!!!
The decision was made last year for me to be home with the boys. I have a jewelry business with Premier Designs that enables me to work from home and work it around my family:) My husband is a hard working man and took us on his insurance so we could be home together. God has provided for us so much! I have more time to focus on my children because I can work in the evenings when they are in bed. I'm only gone a few nights and we save on daycare. What we found is that I can make more being at home then at a 40 hour a week job!!! I am so thankful that he has been so supportive of me. After a long day at work...he comes home and does so much around here!!! I am especially thankful on the evenings that I get to go out and do a show....and he baths the boys and gets them ready for bed!!! He is a wonderful dad! I am so blessed!
The other day, I met the son of our neighbor. He is the same age as Caleb. He was babbling away and he was so candid. The moment was so surreal to me...because not that I was comparing....I was finally realizing the truth of it..like any other child...Caleb is unique. I knew in an instant that although Caleb was not talking like this little boy...that he was still communicating. I know that if we can find a way to know how Autistic Children think...we can help him.
I read a short story written by Emily Perl Kingsley that describes the experience of raising a child with a disability. She compares having a baby like going on a fabulous trip to Italy. Once the big day gets there...off you go and there you land in Holland. There was a change in the flight plan....your in Holland and this is where you must stay. The important thing is you aren't in a horrible, discusting place....it is just different. So now you must go get new guide books and learn the new language (because you were already prepared for Italy). Holland isn't bad...just different...slower paced, not as flashy. But everyone you know is busy coming up and going from Itally...and bragging about what a wonderful time they had there. You could spend your life saying...that is where I was supposed to go...or you could take the time to learn all the lovely, special things about Holland.
So here we are in Holland and is right where we are supposed to be! We're getting the opportunity to meet so many people on this journey!
Our next step is Dr Megson...highly recommended from a friend of mine...Lisa. She has a son with the same diagnosis as Caleb. Dr Megson is a pediatrician and she understands children. She also understands each children on the spectrum have their own unique needs. She is able to order testing that regular doctors won't!!! We will be traveling to Virginia the end of June for the initial consultation. We have hope that this will help us get closer to managing Caleb's needs.
When we got the diagnosis of Pervasive Developmental Disorder..... it still did not sink in that he was Autistic. It wasn't until I talked to a friend of mine who has been on the autisim journey that she explained to me that his diagnosis was on the autistic spectrum! I also read where parents who have children with milder autism symptoms will often question a diagnosis of autism because their child doesn't have "classic" autism symptoms such as head-banging or complete lack of social interaction. Many children with autism appear "normal" and do not have defining physical characterisics. It took a long time to get where we are. Parents of children on this spectrum need to stick together, work together and maintain hope that there will be a cure...until then learn to manage the symptoms.
This is our journey ---an adventure like no other...with our son Caleb. Hold on for the ride of your life!
Caleb was born on June 23, 2006... a perfect, beautiful baby boy! He's our first born...our pride and joy! At 6 months old...right before Christmas...he developed intussusception --a medical condition in which a part of the intestine has invaginated into another section of intestine, similar to the way in which the parts of a collapsible telescope slide into one another. This resulted in an obstruction. Any parent that has ever gone through something like this....knows the fear that goes into that moment. I could have lost my child and I thank God for him everyday!!!!
Like any proceedure, he had to recover. I assumed that this was why he was behind on most of the beginning milestones. With each and every doctor visit, he fell further and further behind. We kept hearing the same thing from parents that we talked to. You can't compare, no child is the same, he'll catch up. I knew in my heart that there was more to this.
At the time, I was working a full time job at an insurance agency and worked part-time teaching woman to dress for success with Premier Designs Jewelry while my son was enrolled in daycare.
After a loving conversation with my Mother-In-Law, Kellie, she confirmed what I had been feeling. She said that because she obviously had children of her own plus she had the experience working in a daycare with children, she noticed something was "different" about Caleb. She couldn't put her finger on it.
The next day, I asked the daycare what their thoughts and needless to say the response was, "We were afraid to tell you because we thought you would get mad." Apparently it was their experience in the past that parents would get mad when they told them their was something wrong with their kids. This really hurt me and I immediately pulled him out of the daycare and onto another. Still we found that it didn't matter how strong the daycare was....he needed more direct attention. A ratio of a few workers to several kids was not going to cut it for a boy that needed more attention. It is my opinion that he is just as smart as all the other children...it is just a different way that he needs to learn.
Caleb is/was not a bad kid. Infact, we were told by so many that he was so calm compared to most. He could sit forever and watch a Baby Einsteen movie and when it would shut off he would get really upset. He didn't make a lot of eye contact and it was so hard to get him on task. He loses focus often. One of the early signs was fascination with buckeling things. He would sit and work with it until he would get it together and once it clasped...he would want to do it again. Over and over and over!! He lines cars up over and over again and will push them back and forth and he is engulfed in watching the wheels go back and forth.
Then there are the meltdowns!!! As I mentioned, Caleb is pretty calm with his behavior. However, when we would get into situations where his surroundings involved a lot of people...he would get overwhelmed. If it was a dinner with family, we could not get him to eat or cooperate with us. Obviously, we would get advice from everyone on how to "correct" him. It has even been said that we just need to spank his butt more and he would act better. If they only knew that spanking a child that has no concept of why he is being spanked or even trying to put him in time out. I've even tried to ignore a tantrum completely. What I have found is he loses a lot of focus and if we could just get his attention...I truly believe the meltdowns would be less!!! Even a simple task of trying to sit down with him and show him how to something is hard. He'll try to do something but usually it only lasts for a few moments then he is more interested in doing his thing.
It took me along time to get past some of the hurtful things that people did not even realize that they did. It is my faith in God that has started this process of healing my heart and teaching me how to forgive people and most importantly push to get the answers that we need to help him. We just had to get it out of our heads that this is in something that we did.
Our son, Conner Matthew was born on June 7, 2009. In the past year, I have got to watch him grow and develop. Already at this age, I am noticing a BIG difference in his development. He makes eye contact, is walking, and even saying a few words!!!
The decision was made last year for me to be home with the boys. I have a jewelry business with Premier Designs that enables me to work from home and work it around my family:) My husband is a hard working man and took us on his insurance so we could be home together. God has provided for us so much! I have more time to focus on my children because I can work in the evenings when they are in bed. I'm only gone a few nights and we save on daycare. What we found is that I can make more being at home then at a 40 hour a week job!!! I am so thankful that he has been so supportive of me. After a long day at work...he comes home and does so much around here!!! I am especially thankful on the evenings that I get to go out and do a show....and he baths the boys and gets them ready for bed!!! He is a wonderful dad! I am so blessed!
The other day, I met the son of our neighbor. He is the same age as Caleb. He was babbling away and he was so candid. The moment was so surreal to me...because not that I was comparing....I was finally realizing the truth of it..like any other child...Caleb is unique. I knew in an instant that although Caleb was not talking like this little boy...that he was still communicating. I know that if we can find a way to know how Autistic Children think...we can help him.
I read a short story written by Emily Perl Kingsley that describes the experience of raising a child with a disability. She compares having a baby like going on a fabulous trip to Italy. Once the big day gets there...off you go and there you land in Holland. There was a change in the flight plan....your in Holland and this is where you must stay. The important thing is you aren't in a horrible, discusting place....it is just different. So now you must go get new guide books and learn the new language (because you were already prepared for Italy). Holland isn't bad...just different...slower paced, not as flashy. But everyone you know is busy coming up and going from Itally...and bragging about what a wonderful time they had there. You could spend your life saying...that is where I was supposed to go...or you could take the time to learn all the lovely, special things about Holland.
So here we are in Holland and is right where we are supposed to be! We're getting the opportunity to meet so many people on this journey!
Our next step is Dr Megson...highly recommended from a friend of mine...Lisa. She has a son with the same diagnosis as Caleb. Dr Megson is a pediatrician and she understands children. She also understands each children on the spectrum have their own unique needs. She is able to order testing that regular doctors won't!!! We will be traveling to Virginia the end of June for the initial consultation. We have hope that this will help us get closer to managing Caleb's needs.
When we got the diagnosis of Pervasive Developmental Disorder..... it still did not sink in that he was Autistic. It wasn't until I talked to a friend of mine who has been on the autisim journey that she explained to me that his diagnosis was on the autistic spectrum! I also read where parents who have children with milder autism symptoms will often question a diagnosis of autism because their child doesn't have "classic" autism symptoms such as head-banging or complete lack of social interaction. Many children with autism appear "normal" and do not have defining physical characterisics. It took a long time to get where we are. Parents of children on this spectrum need to stick together, work together and maintain hope that there will be a cure...until then learn to manage the symptoms.
This is our journey ---an adventure like no other...with our son Caleb. Hold on for the ride of your life!
Subscribe to:
Posts (Atom)
