How do you find the strength to carry on and do what you have to do for the sake of your child? How do you find the words to say when you are challenged? Who do you turn to when things get rough? For me, I turn to my Heavenly Father first, my family second, my friends last. Without this support group I would not make it. There would be no way I could find the strength or the motivation I need to be a good mother.
No matter what your challenges are, it helps to have a support group. It can consist of one good friend or a group of friends and family. They are the people that you can turn to for help. They are the ones that are there with a shoulder to cry on. I feel so blessed to have a wonderful support group. Number one on my list is my sweet husband. I have a wonderful husband who loves me and has put up with me all these years. We are going to be celebrating our 16th year anniversary soon and I honestly don't know where the years went! It's unreal. However, when I look back on all the things we have had to endure then it hits me that we have been through a lot in those years. We have been able to grow together and I feel so lucky to have had him by my side through all the ups and downs of parenthood.
Friends are precious to me. I have some that I have known for most of my life. I have also met many wonderful people who have come and gone, but who have left a life-long impression in my heart. I have learned some valuable lessons that I will carry with me for the rest of my life. Some of those things I have shared with you all in my posts. I have always valued those who are older and wiser than me. It has always amazed me how many people limit their friendships to their small inner circles consisting of people their own age. I guess it's just a foreign concept for me since most of my closest friends are older than I am. Right now I have friends of all ages and all denominations. I have friends who have small families and others with large ones. I have groups of friends that share similar hobbies. Then I have those friends who understand what I go through because they have children with special needs.
The point I want to make is that it's important to surround yourself with people who uplift you and support you. Don't take it personal if someone doesn't want to be your friend once they meet your family with all its challenges. That has happened to me on numerous occasions. In my opinion, it's their loss not mine. My mother always told me, "it's better to be alone than in bad company." That is something that has stuck with me all these years. I would much rather have a couple of good friends than to have dozens who don't really care.
I have to admit that I get so excited each time I meet another mom who has a child like mine. My excitement comes from knowing that already we have a special bond. There is a special connection in knowing that she understands how I feel. I know that she won't judge me like other people would. There is also a mutual understanding that no matter what mistakes our children make it won't change our opinion about them or each other. That is something that noone could comprehend unless you were in our shoes. I also enjoy conversations we have and being able to hear someone say, "I understand" and know they mean it. It is truly priceless.
Another thing I have found is the online community. There are hundreds of thousands of families who are seeking others for support and understanding. There are chatrooms and blogs. There are also numerous forums where you can go and read what other parents are going through. You can post words of encouragement for others as well as post your own question or concern and receive invaluable information. This is one I found tonight: http://www.autism-pdd.net/forum/default.asp I went under google and typed, "autism forums" and had 350,000 results come up! That should tell you something.
One of my friends told me that there is a local support group for parents with children who have autism. She said they offer seminars and often have professionals come and speak on different topics. I have never attended a seminar and someday hope to. I was planning on attending one recently, but it was cancelled due to lack of registration. It was sponsored by our school and evidently it didn't get enough support. I think it's a shame. Hopefully, there will be another one offered soon. I will keep you posted.
The last thing I think is important to discuss is church and prayer. My faith has been my saving grace. There has been so many times when I have knelt in prayer pleading with God to help me. Reading scriptures and praying has helped me to not only cope with stress and discouragement, but also has given me the inspiration and the desire to do more for others. I know that my loving Heavenly Father has placed angels all around me all of my life. I will never forget the day when my daughter snuck out the front door when she was only two and couldn't yet talk. I was nine months pregnant and had laid down just for a second because I was literally exhausted. All of a sudden I felt a chill and felt an urgent need to check on my daughter. I looked all over the house and then when I realized she was not inside. I rushed out the front door. I literally ran down the street looking for my daughter. I was numb and had not yet felt the need to cry. When my neighbors saw me they all calmed me down and helped me look for her. I remember going back into my house and locking myself in the bathroom and pleading for the safe return of my daughter. It was Christmas eve and all I could think of was how horrific it would be if this would be the moment I would remember from now on. It had been twenty minutes and it felt like hours. When I went back outside to look for my daughter I heard others yelling out to me, "We found her......we found her... she's okay.....we found her!" I knew my prayer was answered. That was when I finally was able to feel again and I just sobbed!
I hope that you have the support that you need. If you don't, I urge you to find it. It doesn't matter if you have children with issues or not..... Every mother needs a support network. There is strength in numbers and I can testify that it makes all the difference. Get out and research what is available in your community. Go online and google forums. Surround yourself with friends who really care. Last, but definitely not least, there is strength in knowing that there is a greater force beyond comprehension that can lead and guide you if you would just kneel in prayer.
**********************************
And I say unto you, Ask, and it shall be
given you; seek, and ye shall find;
knock, and it shall be opened unto you
(Luke 11:9)
**********************************
Sunday, October 12, 2008
Saturday, October 11, 2008
The diet factor (Part II)
I truly need to write a book, don't I? I find myself getting deeper and deeper into these topics and my entries end up looking like a magazine article. If you only knew how many hours I have stressed about these things and how much effort I have put into digging for the truth. You would be amazed.
When you go to the doctor and ask for advice on what you can do to help your child who has either autism or ADD/ADHD there is not much they can offer except for drugs. In my opinion, drugs are for children that are at the point where the behavior is either self-destructive or can hurt others. What can you do for a child who has mild symptoms? What options are there for an autistic child who is at the high functioning level? These are questions that I had to figure out on my own.
The first line of defense or treatment should be diet change!! I cannot stress that enough. Everyone knows that certain foods cause problems for some kids. There are some symptoms that are obvious. For example, I fed my daughter orange juice when she was young and she broke out all over her face in welts. I waited for months to feed her orange juice again and when I did she broke out in welts again around her mouth. Now I know that she is definitely allergic to orange juice. She could outgrow it, but for now we avoid it. Other allergies, unfortunately, are NOT so obvious. Behavior change is more subtle. In my case, I tried to keep track of my #2's diet and eventually realized that when he had "pink milk" he would act differently. The strawberry syrup has Red dye #40. That is a big trigger for many kids. It can cause problems with hyperactivity, irritability, restlessness, and being able to sleep. I have to admit that it took me a few weeks of keeping track. The way we found out was I was reading about it online and then decided to stop giving him the syrup, and we immediately saw a change in his behavior. The hard part was I had to make sure, right? So...I gave him some pink milk to test my hypothesis and that day we definitely saw a change. That night he had trouble sleeping and the next day he did not have a good day. Darn the scientific method!!
What do you do when others won't support you or think you're nuts? That is a good question. It's a known fact that most mothers don't want their children to stand out unless it's for a good reason (such as intelligence and looks). So, I wish people would back off when mothers are just trying to do their job. It's also easy to get defensive when others question why you do what you do. The thing to remember is that as long as YOU remain calm and just explain it in a way that others can relate then you are less likely to get the backlash. For example, you can either say, "I am sorry, but Johnny can't have candy right now since it's a known fact that eating too much sugar causes hyperactivity in kids with autism".....or you can say, "Thanks for offering the candy, but Johnny is not allowed to have candy right now." Do you see how just changing a couple of words changes everything? Most mothers would not even question it and "Johnny" doesn't have to hear you defend your decision as a mother.
I think it's important to be consistent with diets. I have to admit that I get so lax with diets. The hardest time for me is when we are not home. I am sure it's that way for most mothers. If I give my children an inch they will take a yard when it comes to breaking rules. My husband is like a kid when it comes to bringing junk food home. Sometimes he will get "fun" cereal as well and then I feel like if we don't eat it then it is wasting food and money. Consequences of breaking diets can last for days. That is why if we do it, we have to take that into consideration. There is no easy answer to this dilemma, but just remember to try and be consistent as much as possible.
Another point I want to make is that some children are deficient in certain vitamins and nutrients. That is why my neurologist started my daughter on a supplement before we even had a diagnosis. He said that certain deficiencies can manifest in different ways. I thought that made perfect sense. I am definitely not a nutritionist and so I could see myself unknowingly feeding my family a diet lacking in something. Why can't doctors test children for this on a routine visit? In my opinion, I think that they should test children after they start solid foods. They could start at age 2 and then do it every six months during their routine visits until about age 4 and then every year after that. (Of course, I am talking about children who are having health problems or issues in development.) Again, this would be too easy. They would much rather wait and see or give drugs.
As years go on I see preventive medicine going down the drain. The pharmaceutical companies have too much money invested in their products and they are going to push doctors to give it to their patients for everything. There are so many alternatives to medicine out there and there are things parents can do without the help of the traditional medical community. The thing I want parents to know is that there is much more to health than meets the eye. Our bodies are a marvelous machine that can heal itself (if you will let it), can tell you when it's sick (if you will listen), and has greater potential than you can imagine (if you only have the faith).
********************************
We live in a "gotta have it now" world
when it comes to everything. This
way of thinking will one day ruin our
health, destroy our planet, and end
everything that we call humanity.
********************************
When you go to the doctor and ask for advice on what you can do to help your child who has either autism or ADD/ADHD there is not much they can offer except for drugs. In my opinion, drugs are for children that are at the point where the behavior is either self-destructive or can hurt others. What can you do for a child who has mild symptoms? What options are there for an autistic child who is at the high functioning level? These are questions that I had to figure out on my own.
The first line of defense or treatment should be diet change!! I cannot stress that enough. Everyone knows that certain foods cause problems for some kids. There are some symptoms that are obvious. For example, I fed my daughter orange juice when she was young and she broke out all over her face in welts. I waited for months to feed her orange juice again and when I did she broke out in welts again around her mouth. Now I know that she is definitely allergic to orange juice. She could outgrow it, but for now we avoid it. Other allergies, unfortunately, are NOT so obvious. Behavior change is more subtle. In my case, I tried to keep track of my #2's diet and eventually realized that when he had "pink milk" he would act differently. The strawberry syrup has Red dye #40. That is a big trigger for many kids. It can cause problems with hyperactivity, irritability, restlessness, and being able to sleep. I have to admit that it took me a few weeks of keeping track. The way we found out was I was reading about it online and then decided to stop giving him the syrup, and we immediately saw a change in his behavior. The hard part was I had to make sure, right? So...I gave him some pink milk to test my hypothesis and that day we definitely saw a change. That night he had trouble sleeping and the next day he did not have a good day. Darn the scientific method!!
What do you do when others won't support you or think you're nuts? That is a good question. It's a known fact that most mothers don't want their children to stand out unless it's for a good reason (such as intelligence and looks). So, I wish people would back off when mothers are just trying to do their job. It's also easy to get defensive when others question why you do what you do. The thing to remember is that as long as YOU remain calm and just explain it in a way that others can relate then you are less likely to get the backlash. For example, you can either say, "I am sorry, but Johnny can't have candy right now since it's a known fact that eating too much sugar causes hyperactivity in kids with autism".....or you can say, "Thanks for offering the candy, but Johnny is not allowed to have candy right now." Do you see how just changing a couple of words changes everything? Most mothers would not even question it and "Johnny" doesn't have to hear you defend your decision as a mother.
I think it's important to be consistent with diets. I have to admit that I get so lax with diets. The hardest time for me is when we are not home. I am sure it's that way for most mothers. If I give my children an inch they will take a yard when it comes to breaking rules. My husband is like a kid when it comes to bringing junk food home. Sometimes he will get "fun" cereal as well and then I feel like if we don't eat it then it is wasting food and money. Consequences of breaking diets can last for days. That is why if we do it, we have to take that into consideration. There is no easy answer to this dilemma, but just remember to try and be consistent as much as possible.
Another point I want to make is that some children are deficient in certain vitamins and nutrients. That is why my neurologist started my daughter on a supplement before we even had a diagnosis. He said that certain deficiencies can manifest in different ways. I thought that made perfect sense. I am definitely not a nutritionist and so I could see myself unknowingly feeding my family a diet lacking in something. Why can't doctors test children for this on a routine visit? In my opinion, I think that they should test children after they start solid foods. They could start at age 2 and then do it every six months during their routine visits until about age 4 and then every year after that. (Of course, I am talking about children who are having health problems or issues in development.) Again, this would be too easy. They would much rather wait and see or give drugs.
As years go on I see preventive medicine going down the drain. The pharmaceutical companies have too much money invested in their products and they are going to push doctors to give it to their patients for everything. There are so many alternatives to medicine out there and there are things parents can do without the help of the traditional medical community. The thing I want parents to know is that there is much more to health than meets the eye. Our bodies are a marvelous machine that can heal itself (if you will let it), can tell you when it's sick (if you will listen), and has greater potential than you can imagine (if you only have the faith).
********************************
We live in a "gotta have it now" world
when it comes to everything. This
way of thinking will one day ruin our
health, destroy our planet, and end
everything that we call humanity.
********************************
Thursday, October 9, 2008
The diet factor (Part I)
I have done a lot of research on different diets out there that are supposed to help with ADD/ADHD and autism. There is so much information that it's almost overwhelming. However, the stories I have read have given me so much hope. I am determined to tell my story to whoever will listen.
As I have already discussed in a previous post, my oldest was diagnosed with ADHD at a young age. Medicines seemed to aggravate his condition and the side-effects were horrible. Unfortunately, our LAST resort should have been our first. We decided to try a special diet that I read in a book that was supposed to help with his symptoms. It was basically a low-carb diet. We also had to avoid red dye, processed foods, and artificial sweeteners. It truly wasn't a hard diet to follow. My son seemed to love the new food I was feeding him for breakfast and he enjoyed not having to take his medicine. He always hated having to swallow those nasty-tasting pills.
We noticed a change right away. We actually saw results faster than with the medicine. It was also a good change for our entire family. I think that processed foods are not good for anyone. When your diet consists mainly of processed foods, your brain is going to suffer no matter who you are. In our church we have what is called the "Word of Wisdom" which faithful members follow. It includes abstaining from tea, coffee, tobacco products, and eating meat sparingly. There is also counsel to exercise the body regularly, eat fruits in season, and wholesome herbs. In my opinion, this is the best "diet" in the world. It is unfortunately one that most people don't follow because of today's lifestyle and fast-paced world.
Let me give you a scenario.... You are a busy working mother who probably stayed up late working on household chores and perhaps catching up on some t.v. shows to wind down from a long day. You wake up and have to get your child ready so you can take him to daycare or school on your way to work. You either pull out some poptarts (the yummy sugary kind that your child loves) or else consider a more healthy breakfast of cold cereal. You decide on the cereal since at least you add milk. It can't be too bad. Then you get ready and pack the bags and drop your child off. You work your 8-hour shift and then decide that you are too tired to cook dinner tonight and so on your way home you grab some dinner at a local fast-food restaurant with a drive-through. You pick up your child and head home. Once home you plop yourself in front of a t.v. with your child and eat your dinner. You put your arm around him thinking that this is such a bonding experience. You give him a kiss on the head and continue to eat your MSG fat-filled hamburger with bacon, lettuce, and tomato.... while your child munches on some chicken nuggets, which consist mainly of fillers and parts, and french fries. Does this sound familiar? It has become a way of life for many people. It is also a contributing factor for a lot of behavioral and health problems in children. This is part of the "environmental factors" that many say contribute to ADD/ADHD and autism.
What did I do to help my child with autism? It was very similar to what I did with my oldest. I have eliminated artificial sweeteners and red dye. I restrict his sugar intake. The biggest thing I do is try to feed him 5 times a day. That is the best way to keep his sugar level steady. He gets breakfast. At school he gets a snack. They have lunch at noon. Then when he gets home I feed him a good snack such as a sandwich or fruit. We finish the day by eating dinner usually by 6pm. That gives him almost two hours to digest his food and get settled for the night. A consistent bedtime is important for our son. He does best when he gets a good night's sleep.
As you can see, these "special diets" are not very extreme. They are actually good for any kid. They are also good for the entire family. There is plenty of scientific evidence to show that they work. I am sure that any pediatrician would agree that those diets are valid.
Now....I am prepared to talk about the controversial one.... The casein/gluten-free diet. My pediatrician doesn't believe it works. He actually told me that it was just a coincidence! Imagine that... does it surprise you? Well, I am here to tell you that something happened after I started that diet with my daughter. We started with just the milk-free part. I thought it was too extreme to change to no milk and no wheat overnight. We started using soy milk and products. I was surprised at how easy the transition was for my family. Everyone loved the vanilla-flavored soy milk that I got. My daughter didn't love the soy cheese but she ate it. I started to pay more attention to the health food isle and I noticed a lot of products that were available. I also went to a natural health food store and was amazed at the products available. It became more obvious that I wasn't the only one following this "crazy" diet.
I did my research on this diet and found a lot of proof that it works. I found numerous doctors who believe in it and who have a good explanation. My neurologist had told me that in some kids milk turns into a morphine-like substance in the brain. This could explain why my daughter slept so much. I have to look at all possibilities when it comes to my daughter since she has a metabolic problem and there are a lot of factors involved. As I said before, my pediatrician did not give credit to the diet. He said it was a coincidence. He asked me if I took her off of it, and I said that eventually I did. He responded, "See...that tells you right there that it wasn't the diet!" Well... let me ask you all this: if you have child who is having trouble speaking and you begin speech therapy and they start speaking better, does that mean that the speech therapy worked? Or is it a coincidence? Is there any way to prove it? My answer is that there is no way to prove that speech therapy works. People could say that given time the child would have learned to speak...right? There is also no way to prove that this diet works. It just does!!! However, I do have to say that it doesn't work with all kids. I think it's because not all kids are affected by milk in the same way.
I could go into all the medical information about how the diet works. However, I think there is a doctor that explains it better than I ever could. I found him one day on "youtube". I must say that he does have a lab and so he does have some vested interest in "selling" his ideas. However, my neurologist also told me the same information and he was just a doctor... not a philanthropist. This is the link to the clip and I urge you to watch it. It's not very long and it is very informative: http://www.youtube.com/watch?v=w7op0m8BtmY
He explains delayed food allergies. He feels autism is an autoimmune disease. He thinks it's partly due to too many vaccines too soon. The target organs are the brain and the gut. He feels timing of vaccines is critical in some children. He doesn't think that vaccines should be one-size fits all. He feels it's critical to figure out the allergens that cause problems and he has a lab that can test for that. Early diagnosis and treatment before age of 3 is critical. That is why I think ALL parents of children with autism should be educated. The earlier they get started the better the chances. Dr. Dan explains that if there is a chance of autism then don't wait for a diagnosis that might not come until the age of 4 or 5. Start NOW! His site to find out more information on testing can be found at: www.sagemedlab.com
I am planning on trying to get that done with my son and I will try and keep you posted on what I find out and if I am successful. I am sure my doctor will not make it easy for me. I wish I still worked at the lab because I could easily have my children's blood drawn and do it myself. I think it would be a good thing to do that for all my children. There is still so much we don't know about food and the way it affects the brain. I just wish that someone had all the answers.
************************************
I know the truth will one day come,
although it's already come for some.
************************************
As I have already discussed in a previous post, my oldest was diagnosed with ADHD at a young age. Medicines seemed to aggravate his condition and the side-effects were horrible. Unfortunately, our LAST resort should have been our first. We decided to try a special diet that I read in a book that was supposed to help with his symptoms. It was basically a low-carb diet. We also had to avoid red dye, processed foods, and artificial sweeteners. It truly wasn't a hard diet to follow. My son seemed to love the new food I was feeding him for breakfast and he enjoyed not having to take his medicine. He always hated having to swallow those nasty-tasting pills.
We noticed a change right away. We actually saw results faster than with the medicine. It was also a good change for our entire family. I think that processed foods are not good for anyone. When your diet consists mainly of processed foods, your brain is going to suffer no matter who you are. In our church we have what is called the "Word of Wisdom" which faithful members follow. It includes abstaining from tea, coffee, tobacco products, and eating meat sparingly. There is also counsel to exercise the body regularly, eat fruits in season, and wholesome herbs. In my opinion, this is the best "diet" in the world. It is unfortunately one that most people don't follow because of today's lifestyle and fast-paced world.
Let me give you a scenario.... You are a busy working mother who probably stayed up late working on household chores and perhaps catching up on some t.v. shows to wind down from a long day. You wake up and have to get your child ready so you can take him to daycare or school on your way to work. You either pull out some poptarts (the yummy sugary kind that your child loves) or else consider a more healthy breakfast of cold cereal. You decide on the cereal since at least you add milk. It can't be too bad. Then you get ready and pack the bags and drop your child off. You work your 8-hour shift and then decide that you are too tired to cook dinner tonight and so on your way home you grab some dinner at a local fast-food restaurant with a drive-through. You pick up your child and head home. Once home you plop yourself in front of a t.v. with your child and eat your dinner. You put your arm around him thinking that this is such a bonding experience. You give him a kiss on the head and continue to eat your MSG fat-filled hamburger with bacon, lettuce, and tomato.... while your child munches on some chicken nuggets, which consist mainly of fillers and parts, and french fries. Does this sound familiar? It has become a way of life for many people. It is also a contributing factor for a lot of behavioral and health problems in children. This is part of the "environmental factors" that many say contribute to ADD/ADHD and autism.
What did I do to help my child with autism? It was very similar to what I did with my oldest. I have eliminated artificial sweeteners and red dye. I restrict his sugar intake. The biggest thing I do is try to feed him 5 times a day. That is the best way to keep his sugar level steady. He gets breakfast. At school he gets a snack. They have lunch at noon. Then when he gets home I feed him a good snack such as a sandwich or fruit. We finish the day by eating dinner usually by 6pm. That gives him almost two hours to digest his food and get settled for the night. A consistent bedtime is important for our son. He does best when he gets a good night's sleep.
As you can see, these "special diets" are not very extreme. They are actually good for any kid. They are also good for the entire family. There is plenty of scientific evidence to show that they work. I am sure that any pediatrician would agree that those diets are valid.
Now....I am prepared to talk about the controversial one.... The casein/gluten-free diet. My pediatrician doesn't believe it works. He actually told me that it was just a coincidence! Imagine that... does it surprise you? Well, I am here to tell you that something happened after I started that diet with my daughter. We started with just the milk-free part. I thought it was too extreme to change to no milk and no wheat overnight. We started using soy milk and products. I was surprised at how easy the transition was for my family. Everyone loved the vanilla-flavored soy milk that I got. My daughter didn't love the soy cheese but she ate it. I started to pay more attention to the health food isle and I noticed a lot of products that were available. I also went to a natural health food store and was amazed at the products available. It became more obvious that I wasn't the only one following this "crazy" diet.
I did my research on this diet and found a lot of proof that it works. I found numerous doctors who believe in it and who have a good explanation. My neurologist had told me that in some kids milk turns into a morphine-like substance in the brain. This could explain why my daughter slept so much. I have to look at all possibilities when it comes to my daughter since she has a metabolic problem and there are a lot of factors involved. As I said before, my pediatrician did not give credit to the diet. He said it was a coincidence. He asked me if I took her off of it, and I said that eventually I did. He responded, "See...that tells you right there that it wasn't the diet!" Well... let me ask you all this: if you have child who is having trouble speaking and you begin speech therapy and they start speaking better, does that mean that the speech therapy worked? Or is it a coincidence? Is there any way to prove it? My answer is that there is no way to prove that speech therapy works. People could say that given time the child would have learned to speak...right? There is also no way to prove that this diet works. It just does!!! However, I do have to say that it doesn't work with all kids. I think it's because not all kids are affected by milk in the same way.
I could go into all the medical information about how the diet works. However, I think there is a doctor that explains it better than I ever could. I found him one day on "youtube". I must say that he does have a lab and so he does have some vested interest in "selling" his ideas. However, my neurologist also told me the same information and he was just a doctor... not a philanthropist. This is the link to the clip and I urge you to watch it. It's not very long and it is very informative: http://www.youtube.com/watch?v=w7op0m8BtmY
He explains delayed food allergies. He feels autism is an autoimmune disease. He thinks it's partly due to too many vaccines too soon. The target organs are the brain and the gut. He feels timing of vaccines is critical in some children. He doesn't think that vaccines should be one-size fits all. He feels it's critical to figure out the allergens that cause problems and he has a lab that can test for that. Early diagnosis and treatment before age of 3 is critical. That is why I think ALL parents of children with autism should be educated. The earlier they get started the better the chances. Dr. Dan explains that if there is a chance of autism then don't wait for a diagnosis that might not come until the age of 4 or 5. Start NOW! His site to find out more information on testing can be found at: www.sagemedlab.com
I am planning on trying to get that done with my son and I will try and keep you posted on what I find out and if I am successful. I am sure my doctor will not make it easy for me. I wish I still worked at the lab because I could easily have my children's blood drawn and do it myself. I think it would be a good thing to do that for all my children. There is still so much we don't know about food and the way it affects the brain. I just wish that someone had all the answers.
************************************
I know the truth will one day come,
although it's already come for some.
************************************
Wednesday, October 8, 2008
My new favorite book
I just finished reading "Louder Than Words" by Jenny McCarthy. It only took me two days to read the book. I know it's a short paperback, but when I have only a few minutes each day to read anything other than children's books....I think that's pretty good! Once I started reading I could not put the book down. I absorbed every word and looked forward to each new chapter. There are so many things that echoed my blog! I could not believe it! I actually told my dear husband that people are going to think I read the book and then started up this blog... hehe.... I am just glad to see that I am not the only one in the world who feels like it's their mission to educate and offer hope to parents.
**Disclaimer: The only negative thing about the book is her choice of "colorful" adjectives and language. I know she can be vulgar at times, but I didn't expect it to come out in her book. Just keep that in mind if you are planning on reading it. You might not want your child to get a hold of the book. Most of it was anger and frustration at the doctors who failed to listen to her. I can totally relate. There have been numerous times when I think I would have used more colorful language if I were not LDS. One of my friends told me I should start using my Spanish more often. Hey.... that's an idea.
The thing I liked most about this book is the way she presented the facts. She didn't interpret what was happening at the beginning. She basically laid out all the facts and what occurred, thus letting the readers come to their conclusions. Although her story was nothing like mine, I still saw some parallels and similarities. I especially related to how the doctors treated her. I hope people don't think that she has no respect for doctors. I think that she just had the worst luck when it came to her son's treatment. She wound up getting a lot of young doctors who were still doing their internships and were not experienced. She begged for a neurologist and it took days before she saw one. I know how frustrating it can be when you have a child who is suffering and the one person you feel can help is not available.
She winds up being visited by the "Mormon missionaries" throughout the book and I thought some of the stories were funny. She actually thanked the Mormon Church at the beginning of the book. I thought that was sweet. She is not a member of our church, but she has a great respect for it. She definitely makes that known.
I don't care who you are... when you read about a mother's turmoil and heartache because of the pain her child experiences you can't help but feel it too. I actually cried throughout some of the chapters because I could just envision what she was going through. I remember when my oldest child had his seizures when he was very young. I worried that he would have brain damage. They called them febrile seizures in his case too. To this day I wonder if he may have suffered from vaccine injury as well. We will never know. Unfortunately, that's what they call it whenever they don't have any other explanation. Who knows how many children are misdiagnosed?
The climax of the book for me was when she went back in time after the doctor told her that her son had autism, and she took the reader through the first couple years of her son's life. She explained some of his behaviors and quirks that later would validate the autism diagnosis. The hand flapping or "stimming" was something she thought was cute. Also his tip-toe walking was another sign. He had a very limited vocabulary and played with toys differently than other kids his age. He had an obsession with certain cartoons or toys. All these things later would bombard her mind as she put the pieces of the puzzle together. It was truly enlightening.
Jenny could not have picked a better title for her book. She explains that the bond with her child was something that went so deep that it was "beyond words" because she could feel his love. I think that's true with most mothers. When a baby smiles that first smile it just melts your heart. The baby doesn't have to say, "I love you mommy" because you just know. I also think that "beyond words" can have another meaning. It's beyond my comprehension how some doctors will not listen to mothers. It's beyond my comprehension how even though autism is on the rise the medical community refuses to seek answers. Their solution is to drug kids. It's so obvious. If there isn't a drug for what your child has... then you're out of luck. That's insane! There are so many options out there. Why can't they see that some of them actually work.
"Beyond Words" by Jenny McCarthy is definitely a book that I would recommend. It's not a "how-to" book on autism, but it is filled with invaluable information and resources. At the end of the book she lists special diets and different resources. She mentions DAN doctors and you need to read the book to find out who they are. I am definitely going to do my research and find the nearest one.
****************************************
I hope that those of you seeking answers
will find them. I pray that those of you
who have lost hope will endure. The road
will not be easy, but it will definitely
be worth it!
****************************************
**Disclaimer: The only negative thing about the book is her choice of "colorful" adjectives and language. I know she can be vulgar at times, but I didn't expect it to come out in her book. Just keep that in mind if you are planning on reading it. You might not want your child to get a hold of the book. Most of it was anger and frustration at the doctors who failed to listen to her. I can totally relate. There have been numerous times when I think I would have used more colorful language if I were not LDS. One of my friends told me I should start using my Spanish more often. Hey.... that's an idea.
The thing I liked most about this book is the way she presented the facts. She didn't interpret what was happening at the beginning. She basically laid out all the facts and what occurred, thus letting the readers come to their conclusions. Although her story was nothing like mine, I still saw some parallels and similarities. I especially related to how the doctors treated her. I hope people don't think that she has no respect for doctors. I think that she just had the worst luck when it came to her son's treatment. She wound up getting a lot of young doctors who were still doing their internships and were not experienced. She begged for a neurologist and it took days before she saw one. I know how frustrating it can be when you have a child who is suffering and the one person you feel can help is not available.
She winds up being visited by the "Mormon missionaries" throughout the book and I thought some of the stories were funny. She actually thanked the Mormon Church at the beginning of the book. I thought that was sweet. She is not a member of our church, but she has a great respect for it. She definitely makes that known.
I don't care who you are... when you read about a mother's turmoil and heartache because of the pain her child experiences you can't help but feel it too. I actually cried throughout some of the chapters because I could just envision what she was going through. I remember when my oldest child had his seizures when he was very young. I worried that he would have brain damage. They called them febrile seizures in his case too. To this day I wonder if he may have suffered from vaccine injury as well. We will never know. Unfortunately, that's what they call it whenever they don't have any other explanation. Who knows how many children are misdiagnosed?
The climax of the book for me was when she went back in time after the doctor told her that her son had autism, and she took the reader through the first couple years of her son's life. She explained some of his behaviors and quirks that later would validate the autism diagnosis. The hand flapping or "stimming" was something she thought was cute. Also his tip-toe walking was another sign. He had a very limited vocabulary and played with toys differently than other kids his age. He had an obsession with certain cartoons or toys. All these things later would bombard her mind as she put the pieces of the puzzle together. It was truly enlightening.
Jenny could not have picked a better title for her book. She explains that the bond with her child was something that went so deep that it was "beyond words" because she could feel his love. I think that's true with most mothers. When a baby smiles that first smile it just melts your heart. The baby doesn't have to say, "I love you mommy" because you just know. I also think that "beyond words" can have another meaning. It's beyond my comprehension how some doctors will not listen to mothers. It's beyond my comprehension how even though autism is on the rise the medical community refuses to seek answers. Their solution is to drug kids. It's so obvious. If there isn't a drug for what your child has... then you're out of luck. That's insane! There are so many options out there. Why can't they see that some of them actually work.
"Beyond Words" by Jenny McCarthy is definitely a book that I would recommend. It's not a "how-to" book on autism, but it is filled with invaluable information and resources. At the end of the book she lists special diets and different resources. She mentions DAN doctors and you need to read the book to find out who they are. I am definitely going to do my research and find the nearest one.
****************************************
I hope that those of you seeking answers
will find them. I pray that those of you
who have lost hope will endure. The road
will not be easy, but it will definitely
be worth it!
****************************************
Tuesday, October 7, 2008
To label or not to label? That is the question.
I think this post is long overdue. Numerous people have commented on how they are afraid to label their child. I have to admit that at one time I was among those numbers. The problem is that people fear that once you label a child then they have to carry that with them for the rest of their lives. Well.... if you are wrongly diagnosed then I agree that is a problem. However, if your child DOES have a legitimate condition then you need to weigh the pros and cons. I am prepared to discuss those with you.
I will start with the cons..... If you research online you will find numerous sources that discuss the negative effects of labeling on children's self esteem and potential. You will read warnings to parents and teachers about the way sometimes labels will change the way children see themselves. It often will also change the way teachers and parents treat children and their expectations. All of these things are legitimate concerns.
I have already discussed how some parents will actually use a diagnosis as an excuse not to parent. I have often seen people make excuses for their children without correcting them because of their condition. The other thing that is a shame is the wrongful use of diagnosis. I had one psychologist tell me that some people in medical school will try and get diagnosed with ADD/ADHD so that they can get the prescription Ritalin and be able to concentrate better for their exams. All it takes is answering the questions correctly on the questionnaire and they can get a diagnosis. Some parents do the same thing to use the drugs to lose weight. That one REALLY shocked me!! I have to admit that I ONCE considered trying out Ritalin (when we were having all the problems with my son) just to see how it made ME feel since my son couldn't talk and tell me. However, I could not do it.... I tried, but my gut told me not to do it. I am so glad that I listened. I am sure there are parents out there who are addicted to it.
Another con is that sometimes children are misdiagnosed. Once you get a certain diagnosis then the "plan of action" goes into effect and it's kind of hard to stop the domino effect that follows. There are so many things that parallel one another. What if you have a child who is "hyper" and also has food allergies? That could easily be diagnosed as ADHD. What about the child who is just a "late bloomer" and is diagnosed as PDD? There are many examples, but I think you get the idea.
Now, what about the pros? The most important thing, in my opinion, is getting treatment and services for your child. Once you have a label then you can get the help you need. Often times you can get free services that are offered at the public school level. Our state has "Early Intervention Services" and it was totally free and helped my children very much. Early intervention is key to helping a child reach their potential. It has been my personal experience that parental involvement in the process is also critical. For example, you can't expect a speech therapist to come to your home once a week or every other week and forget about it. I talked to mine and received valuable information and advice on things I could do in between sessions. I know that is why it worked for us.
Another thing that is helpful when labeling is that you can move forward. When you don't know what you're dealing with then it feels like you are in quicksand just being pulled downward. The harder you try to get out, the deeper you sink. That is exactly how I felt before getting a diagnosis with my #2. Moving forward means that you can now include other people and form a team on behalf of your child. You don't have to do it alone.
Lastly, labeling helps or makes it easier for others who come in contact with your child to understand (sometimes) their behavior. Instead of thinking that your child is being a spoiled bratt or that you are not doing your job as a parent, you can enlighten others to the fact and most people will have a general idea of what you're talking about. For example, today I took my children to gymnastics and ballet. One of the teachers approached me and told me that my #2 was not behaving today and that he would at times run around instead of staying where he was supposed to be. I strongly reprimanded my son (including not letting him have a "treat" after class while his siblings all got treats)... then I could see that there was more because the teacher just kept looking at me and then he said that he had slobbered or spit on the matt and that he just didn't know how to handle that behavior. He then asked me if he was ADD or what? I quickly said, "No...he's not.....BUT...he IS PDD..." He had a puzzled look on his face. I then continued, "Autism?" Then he quickly did an "Oh....I see....." and I explained to him that normally I was at my daughter's ballet section of the building, but that I would make sure I was around next time so that he could just flag me over whenever he misbehaved and we could put him in "time-out". He was happy with that. He was a young kid about sixteen or seventeen and as he turned and walked away I got to thinking about his mannerisms and the way he communicated with me, and I got the feeling that he was probably in the autism spectrum himself. I could tell he was extremely bright, but there was something kind of "off" about him. I can't exactly pinpoint it, but when you've been around it enough, you just know.
Now...what do I think about labeling? In my experience it's been a good thing. I have obtained invaluable help from it. I was able to get my oldest two children into a very good school because of it. I received free services from the state because of it. I feel my children have a better chance of leading a more normal life because of it. Also, I feel it has given me options that I didn't have before. Ironically, narrowing down their issues to a "label" has opened the doors to many possibilities that I had not thought of. Part of this has to do with the fact that I have been exposed to a lot of information that has changed the way I raise and take care of my children. For example, with my oldest I learned that he needed a diet that had less carbs and more protein. In essence, a more healthy diet. That was a positive impact on everyone in our family. When my daughter went to the neurologist who gave me a list of foods she should avoid such as red dye, artificial sweeteners, hot dogs, etc... It was definitely a positive thing for our family. Those are things we should ALL avoid anyway. Then with my #2, we realized that children in the autism spectrum need a more structured environment and consistent discipline. Who DOESN'T need more of that?
I know it's not an easy decision. It is one that can't be made in haste. First, make sure that your child has the proper diagnosis. Secondly, weigh all your options. Lastly, take advantage of all the resources available to you to help your child. Don't look at a label as the person your child is going to be.... look at it as one of your child's challenges that can be overcome.
****************************************
"Accept the challenges so that you can feel the
exhilaration of victory." ~ George S. Patton
****************************************
"Life's challenges are not supposed to paralyze
you, they're supposed to help you discover who
you are." ~ Bernice Johnson Reagon
****************************************
I will start with the cons..... If you research online you will find numerous sources that discuss the negative effects of labeling on children's self esteem and potential. You will read warnings to parents and teachers about the way sometimes labels will change the way children see themselves. It often will also change the way teachers and parents treat children and their expectations. All of these things are legitimate concerns.
I have already discussed how some parents will actually use a diagnosis as an excuse not to parent. I have often seen people make excuses for their children without correcting them because of their condition. The other thing that is a shame is the wrongful use of diagnosis. I had one psychologist tell me that some people in medical school will try and get diagnosed with ADD/ADHD so that they can get the prescription Ritalin and be able to concentrate better for their exams. All it takes is answering the questions correctly on the questionnaire and they can get a diagnosis. Some parents do the same thing to use the drugs to lose weight. That one REALLY shocked me!! I have to admit that I ONCE considered trying out Ritalin (when we were having all the problems with my son) just to see how it made ME feel since my son couldn't talk and tell me. However, I could not do it.... I tried, but my gut told me not to do it. I am so glad that I listened. I am sure there are parents out there who are addicted to it.
Another con is that sometimes children are misdiagnosed. Once you get a certain diagnosis then the "plan of action" goes into effect and it's kind of hard to stop the domino effect that follows. There are so many things that parallel one another. What if you have a child who is "hyper" and also has food allergies? That could easily be diagnosed as ADHD. What about the child who is just a "late bloomer" and is diagnosed as PDD? There are many examples, but I think you get the idea.
Now, what about the pros? The most important thing, in my opinion, is getting treatment and services for your child. Once you have a label then you can get the help you need. Often times you can get free services that are offered at the public school level. Our state has "Early Intervention Services" and it was totally free and helped my children very much. Early intervention is key to helping a child reach their potential. It has been my personal experience that parental involvement in the process is also critical. For example, you can't expect a speech therapist to come to your home once a week or every other week and forget about it. I talked to mine and received valuable information and advice on things I could do in between sessions. I know that is why it worked for us.
Another thing that is helpful when labeling is that you can move forward. When you don't know what you're dealing with then it feels like you are in quicksand just being pulled downward. The harder you try to get out, the deeper you sink. That is exactly how I felt before getting a diagnosis with my #2. Moving forward means that you can now include other people and form a team on behalf of your child. You don't have to do it alone.
Lastly, labeling helps or makes it easier for others who come in contact with your child to understand (sometimes) their behavior. Instead of thinking that your child is being a spoiled bratt or that you are not doing your job as a parent, you can enlighten others to the fact and most people will have a general idea of what you're talking about. For example, today I took my children to gymnastics and ballet. One of the teachers approached me and told me that my #2 was not behaving today and that he would at times run around instead of staying where he was supposed to be. I strongly reprimanded my son (including not letting him have a "treat" after class while his siblings all got treats)... then I could see that there was more because the teacher just kept looking at me and then he said that he had slobbered or spit on the matt and that he just didn't know how to handle that behavior. He then asked me if he was ADD or what? I quickly said, "No...he's not.....BUT...he IS PDD..." He had a puzzled look on his face. I then continued, "Autism?" Then he quickly did an "Oh....I see....." and I explained to him that normally I was at my daughter's ballet section of the building, but that I would make sure I was around next time so that he could just flag me over whenever he misbehaved and we could put him in "time-out". He was happy with that. He was a young kid about sixteen or seventeen and as he turned and walked away I got to thinking about his mannerisms and the way he communicated with me, and I got the feeling that he was probably in the autism spectrum himself. I could tell he was extremely bright, but there was something kind of "off" about him. I can't exactly pinpoint it, but when you've been around it enough, you just know.
Now...what do I think about labeling? In my experience it's been a good thing. I have obtained invaluable help from it. I was able to get my oldest two children into a very good school because of it. I received free services from the state because of it. I feel my children have a better chance of leading a more normal life because of it. Also, I feel it has given me options that I didn't have before. Ironically, narrowing down their issues to a "label" has opened the doors to many possibilities that I had not thought of. Part of this has to do with the fact that I have been exposed to a lot of information that has changed the way I raise and take care of my children. For example, with my oldest I learned that he needed a diet that had less carbs and more protein. In essence, a more healthy diet. That was a positive impact on everyone in our family. When my daughter went to the neurologist who gave me a list of foods she should avoid such as red dye, artificial sweeteners, hot dogs, etc... It was definitely a positive thing for our family. Those are things we should ALL avoid anyway. Then with my #2, we realized that children in the autism spectrum need a more structured environment and consistent discipline. Who DOESN'T need more of that?
I know it's not an easy decision. It is one that can't be made in haste. First, make sure that your child has the proper diagnosis. Secondly, weigh all your options. Lastly, take advantage of all the resources available to you to help your child. Don't look at a label as the person your child is going to be.... look at it as one of your child's challenges that can be overcome.
****************************************
"Accept the challenges so that you can feel the
exhilaration of victory." ~ George S. Patton
****************************************
"Life's challenges are not supposed to paralyze
you, they're supposed to help you discover who
you are." ~ Bernice Johnson Reagon
****************************************
Saturday, October 4, 2008
Mystery Diagnosis
I have had numerous people ask me what exactly happened to my daughter. Those who have known her for years can definitely see a change in her. It's a mystery and unfortunately is yet to be resolved on paper. However, I have my theories and I am prepared to explain what I think TRULY happened to my daughter.
When my daughter was born she was healthy and strong. She met all of the milestones on time and we did not have any reason to worry about her for the first 18 months of her life. She had great eye-contact and was very social. She also ate very well and slept like she should. I also remember her first words being directed towards her oldest brother (with whom she is still very close) and how sweet it was. I felt good about her progress.
Her language skills continued to progress. She was making more sounds and attempting to communicate. It was so cute listening to her. She liked her pacifier a lot and so I tried to limit her use of it so that she would not be hindered in any way. I read her lots of books and tried to spend as much time working on vocabulary and animal sounds. She was doing better than the boys and so I was optimistic that she would eventually talk.
I will never forget the day that I noticed something very odd. My daughter was a little over 18 months. I had placed her in a high chair in the kitchen and she seemed so content. She was sitting there for probably 15-20 minutes and I noticed her hands were turning kind of purple. Her feet were also a weird color. I touched them and they didn't feel cold. It definitely wasn't cold inside the house either. At first I just thought that perhaps she had been sitting there too long? I picked her up and held her for a few minutes. Her hands and feet eventually returned back to their normal color. A few days later I observed the same thing. She was sitting on the high chair and I noticed her hands were a weird color again. Also, this time I noticed her lips looking a bit different as well.
I decided it was time to call the doctor. I called the "Nurse's Line" and told them what I had observed. The first thing they asked was what I had fed her. I knew where they were going with this.... (No...she did not have orange nose or orange skin from the orange veggies I was feeding her at the time.) The nurse I spoke to told me that it was normal in babies to see the blue hands and/or feet since their circulatory systems are still developing. She continued and said that if they stayed that way then to give them a call, but if they returned back to normal then it was okay. I said, "Yeah... but she is 18 months...is that normal?" She reassured me it was. Of course, deep down in my gut I had a feeling it wasn't. It's interesting how the mind works. I had my doubts, but of course I wanted everything to be okay with her. So... I joined the "Denial Club" and went on my merry way.
At this time I started to notice that other kids her age were weaning their second naps. They were sleeping a lot less. My daughter would sleep a lot!! She would take about two naps a day and they were never less than two hours long. I remember a few times when she slept about six hours total and I mentioned it to my friends and they were shocked. I guess I had not realized that she was sleeping half the day away. They asked me if she was getting sick and I explained that it was normal for her to sleep that much. (Remember.... I was still in the "Denial Club" during all of this.) I began to take notice and started keeping track of her sleeping pattern.
We had begun potty-training and I was so excited. I had not been able to start potty-training before the age of three and so this was a first for me. I was thrilled to see that she could actually stay dry during naps and that she was showing an interest in going to the potty. However, she regressed and we were back to where we started. I tried everything I could to encourage her, but nothing worked. It was definitely frustrating.
By the time my daughter turned two it was obvious that she was lagging behind in her speech. Since my older two had to have speech therapy it wasn't shocking for me. I decided to wait just a few months to see if perhaps something would "click" in her. However, I didn't see any improvement and I could tell she was starting to get frustrated. Her social skills were also lacking and I saw a change in her. She started to act differently. I couldn't communicate with her and so we would have more outbursts and tantrums. I decided it was time to get her evaluated for Early Intervention and that's what we did.
She was evaluated and found to be more than 25% delayed and so she qualified for the program. They tried to test her hearing but she screamed so much that they couldn't do it. She was very sensitive to anyone touching her. She would "freak-out" whenever anyone wanted to look into her ears. (This was also when we found out that she was having optic seizures or "staring spells".) The lady that performed the evaluation suggested I take her to a neurologist. I am so glad that I listened to this "angel" of mine.
I was so excited because they came to my house and she didn't have to go to a daycare. At this time I was really paranoid about putting her in a daycare when she couldn't communicate. My fear was that something would happen to her and she wouldn't be able to tell me. That fear was actually validated by the speech therapist. That made me feel so much better. I love all my children the same, but there is a certain feeling of vulnerability when it comes to daughters. It's not until you have one that you can understand.
Of course, it wasn't easy getting the appointment to see the neurologist. We had to see the pediatrician first and then get a referral. Once we got the referral, it was another two months before we were able to get an appointment. FINALLY, we were able to see a Pediatric Neurologist named Dr. Corbier. I still give him credit for saving my daughter's life. He looked at her and examined her. He took many laboratory tests and performed EEG's and MRI. He did a very thorough exam. Initially he told me that she had some Autistic traits. He asked me how long she had walked on her "tip-toes" and I had not even noticed that. I estimated that she had started doing that at about 18 months? I thought it was cute and had not realized it was actually a symptom. Dr. Corbier told me that there was nothing wrong with her feet. She had a great arch and wasn't flat footed. He told me that her hips and legs were perfect. He then asked me about the staring spells and how often I had observed her doing it. I told him that I didn't realize that's what they were until the Speech Evaluation was done. I told him that she would "zone out" while watching t.v. and sometimes while in the car. I asked him what was significant about that since I had noticed my older boys doing that as well when they were young. He explained that in a TRUE staring spell, the child will not respond. You can call out their name or even touch them and they won't respond. He asked me to keep track of it and bring the information with me on the next appointment.
At the next appointment we sat down and discussed the test results. He was a bit concerned with some of them. Her serum copper was so low that he wanted to repeat it. Her ceruloplasmin was also extremely low. She had some other abnormal values that he thought was worth following up with. Then he talked to me about doing something kind of different. He mentioned that in some kids, changing the diet made a difference. He gave me a diet that was called "Casein/gluten-free diet" and explained it to me. (It was basically a dairy-free/wheat-free diet.) He told me that I should also give my daughter a certain liquid supplement that he strongly suggested. He mentioned that in some kids, milk will turn into a substance similar to morphine. That was shocking to me. However, it would explain why my daughter slept so much. She drank a lot of milk! He also said that milk has a lot of things in it that is not great for brain development. He gave me his website address and told me to read more there. THEN... he mentioned that some people believe that vaccines have something to do with neurological problems in children. Don't ask me why, but when he said that a light came on inside my brain. It was an "A-Ha" moment for me. I listened to him and was determined to do some research and find out all I could.
We started the diet in phases. I thought it was a very radical step and I was kind of skeptical about it. We changed to soy milk and even tried some soy cheese and similar products. She actually did well. All the kids transitioned to soy very easily and I was excited. Within a week, she began to show signs of progress. Her vocabulary doubled! Then after the second week she actually said her first sentence. I was so thrilled!! Could this be a coincidence? Why did a change from milk to soy make such a difference? I was determined to find out!
I did my research and found out that there were many parents out there in the autism community who had similar stories to tell. Traditional medicine does not believe in this and that is why I had never heard about it. Why aren't doctors willing to look into these findings. It's not medicine...that's why. This is a brief explanation of some theories: http://www.autism.org/leakygut.html
My own observation and conclusion is that it's definitely worth a try and it's NOT going to hurt your child if done properly. Many parents already believe that milk, beyond breast milk, is not necessary anyway. Many parents believe that the calcium in milk is not absorbed easily by the body anyway and that there are better ways of getting it. There are also many who believe that there are too many things in milk that are NOT good for kids. In my opinion it's definitely worth a try. Here is some good information about soy milk vs. cow milk: http://ask.yahoo.com/20021106.html
You can do your own research and find thousands of websites devoted towards educating parents about this issue. The main thing to remember is that you will need to make sure that your child is not lacking in any vitamins. That is why Dr. Corbier made sure we put my daughter on supplements when we changed to soy milk. Also, you don't want to go "cold-turkey" when changing a child's diet. Do it slowly and responsibly. You could actually do harm if you changed your child's diet to no milk and no wheat overnight. I will try and remember to do a special post on this controversial diet in the near future. :)
We continued with her speech therapy and when she turned 3 we put her in a local church Mom's Morning Out program. I met with the people and they were so sweet. I explained that she would be getting speech therapy services at the school and they were so accommodating. I felt like it was the perfect place for her and I knew that being around other kids her age would help her with her social skills. I was also impressed with the testing they did. They actually had a "play-based program" and they would test the kids and make sure they were making progress. The classes were small enough that they could individualize the program to meet the children's needs. It was awesome!!
In the end, she progressed to the point that no one knew anything was ever wrong with her. She stopped walking on her tip-toes after she turned 3 and I noticed her staring spells less and less. She matured and was more social. She was able to make and keep friends. It was as if she was another child. There is no "medical explanation" for her recovery. However, there are three things I did. First, we did the speech therapy. Secondly, we changed her diet. Thirdly, we stopped giving her vaccines. Speech therapy alone would not have explained her recovery. In my opinion changing her diet flipped a "switch" of sorts in her brain and she started to benefit from the therapy. Not introducing her body to any more toxins and/or vaccines was another factor that contributed to her recovery. You see.... it was no coincidence.
What happened to my child? I believe that it was vaccine injury. There is no other explanation. She was regressing.... she was showing "signs of autism" and doctors had no conventional solutions for me. She was not speaking....she would grunt or point... she would have tantrums and outbursts because of her frustration. Also, in hindsight I remember that her "episodes" where her feet and hands turned blue occurred at about the time she received her immunizations. This is no coincidence. Now that we know Sarah has Wilson's Disease it makes a little more sense to me. Her body has a metabolic defect. She can't process copper like others. Her ceruloplasmin is extremely low. I did my research and vaccines have tons of chemicals and by-products (such as formaldehyde, anti-freeze, metals, etc....) that probably cannot be excreted as easily for her. It was a cumulative effect on her body. As soon as we stopped vaccinating, then her body was able to start the healing process. She got better.
Okay....so there are two sides to the coin. What about Wilson's Disease? Well... we saw an improvement in her symptoms waaaaaay before we even diagnosed her with Wilson's. So, even though the doctor wants to claim that's the reason... it is not! As a matter of fact, we probably unknowingly gave her copper-rich foods during that time.... and we still saw improvement. Also, what about autism? Well... if she had autism, then we would not have seen such a dramatic change in her. It's true that in some cases, the symptoms do improve with age.... However, they don't ALL go AWAY... they just get BETTER. With her, the symptoms WENT AWAY! That's the difference. Except for the Wilson's, she is perfectly healthy and normal. She has friends and even the teacher has made comments that she is doing great in school.
The most frustrating thing about this is that when I asked the pediatrician about it, he did not even want to entertain the idea. Even after I mentioned that Dr. Corbier had suggested it, he rolled his eyes. I know I am not a doctor, but I am a mother and I know what I saw. I know what I witnessed. I can tell you what happened before my eyes. Now... do you blame me for feeling the way I do? Can you blame me for being so cautious? Do YOU have another explanation? I am all ears. :)
***********************************
"The important thing is not to stop
questioning" ~ Albert Einstein
***********************************
When my daughter was born she was healthy and strong. She met all of the milestones on time and we did not have any reason to worry about her for the first 18 months of her life. She had great eye-contact and was very social. She also ate very well and slept like she should. I also remember her first words being directed towards her oldest brother (with whom she is still very close) and how sweet it was. I felt good about her progress.
Her language skills continued to progress. She was making more sounds and attempting to communicate. It was so cute listening to her. She liked her pacifier a lot and so I tried to limit her use of it so that she would not be hindered in any way. I read her lots of books and tried to spend as much time working on vocabulary and animal sounds. She was doing better than the boys and so I was optimistic that she would eventually talk.
I will never forget the day that I noticed something very odd. My daughter was a little over 18 months. I had placed her in a high chair in the kitchen and she seemed so content. She was sitting there for probably 15-20 minutes and I noticed her hands were turning kind of purple. Her feet were also a weird color. I touched them and they didn't feel cold. It definitely wasn't cold inside the house either. At first I just thought that perhaps she had been sitting there too long? I picked her up and held her for a few minutes. Her hands and feet eventually returned back to their normal color. A few days later I observed the same thing. She was sitting on the high chair and I noticed her hands were a weird color again. Also, this time I noticed her lips looking a bit different as well.
I decided it was time to call the doctor. I called the "Nurse's Line" and told them what I had observed. The first thing they asked was what I had fed her. I knew where they were going with this.... (No...she did not have orange nose or orange skin from the orange veggies I was feeding her at the time.) The nurse I spoke to told me that it was normal in babies to see the blue hands and/or feet since their circulatory systems are still developing. She continued and said that if they stayed that way then to give them a call, but if they returned back to normal then it was okay. I said, "Yeah... but she is 18 months...is that normal?" She reassured me it was. Of course, deep down in my gut I had a feeling it wasn't. It's interesting how the mind works. I had my doubts, but of course I wanted everything to be okay with her. So... I joined the "Denial Club" and went on my merry way.
At this time I started to notice that other kids her age were weaning their second naps. They were sleeping a lot less. My daughter would sleep a lot!! She would take about two naps a day and they were never less than two hours long. I remember a few times when she slept about six hours total and I mentioned it to my friends and they were shocked. I guess I had not realized that she was sleeping half the day away. They asked me if she was getting sick and I explained that it was normal for her to sleep that much. (Remember.... I was still in the "Denial Club" during all of this.) I began to take notice and started keeping track of her sleeping pattern.
We had begun potty-training and I was so excited. I had not been able to start potty-training before the age of three and so this was a first for me. I was thrilled to see that she could actually stay dry during naps and that she was showing an interest in going to the potty. However, she regressed and we were back to where we started. I tried everything I could to encourage her, but nothing worked. It was definitely frustrating.
By the time my daughter turned two it was obvious that she was lagging behind in her speech. Since my older two had to have speech therapy it wasn't shocking for me. I decided to wait just a few months to see if perhaps something would "click" in her. However, I didn't see any improvement and I could tell she was starting to get frustrated. Her social skills were also lacking and I saw a change in her. She started to act differently. I couldn't communicate with her and so we would have more outbursts and tantrums. I decided it was time to get her evaluated for Early Intervention and that's what we did.
She was evaluated and found to be more than 25% delayed and so she qualified for the program. They tried to test her hearing but she screamed so much that they couldn't do it. She was very sensitive to anyone touching her. She would "freak-out" whenever anyone wanted to look into her ears. (This was also when we found out that she was having optic seizures or "staring spells".) The lady that performed the evaluation suggested I take her to a neurologist. I am so glad that I listened to this "angel" of mine.
I was so excited because they came to my house and she didn't have to go to a daycare. At this time I was really paranoid about putting her in a daycare when she couldn't communicate. My fear was that something would happen to her and she wouldn't be able to tell me. That fear was actually validated by the speech therapist. That made me feel so much better. I love all my children the same, but there is a certain feeling of vulnerability when it comes to daughters. It's not until you have one that you can understand.
Of course, it wasn't easy getting the appointment to see the neurologist. We had to see the pediatrician first and then get a referral. Once we got the referral, it was another two months before we were able to get an appointment. FINALLY, we were able to see a Pediatric Neurologist named Dr. Corbier. I still give him credit for saving my daughter's life. He looked at her and examined her. He took many laboratory tests and performed EEG's and MRI. He did a very thorough exam. Initially he told me that she had some Autistic traits. He asked me how long she had walked on her "tip-toes" and I had not even noticed that. I estimated that she had started doing that at about 18 months? I thought it was cute and had not realized it was actually a symptom. Dr. Corbier told me that there was nothing wrong with her feet. She had a great arch and wasn't flat footed. He told me that her hips and legs were perfect. He then asked me about the staring spells and how often I had observed her doing it. I told him that I didn't realize that's what they were until the Speech Evaluation was done. I told him that she would "zone out" while watching t.v. and sometimes while in the car. I asked him what was significant about that since I had noticed my older boys doing that as well when they were young. He explained that in a TRUE staring spell, the child will not respond. You can call out their name or even touch them and they won't respond. He asked me to keep track of it and bring the information with me on the next appointment.
At the next appointment we sat down and discussed the test results. He was a bit concerned with some of them. Her serum copper was so low that he wanted to repeat it. Her ceruloplasmin was also extremely low. She had some other abnormal values that he thought was worth following up with. Then he talked to me about doing something kind of different. He mentioned that in some kids, changing the diet made a difference. He gave me a diet that was called "Casein/gluten-free diet" and explained it to me. (It was basically a dairy-free/wheat-free diet.) He told me that I should also give my daughter a certain liquid supplement that he strongly suggested. He mentioned that in some kids, milk will turn into a substance similar to morphine. That was shocking to me. However, it would explain why my daughter slept so much. She drank a lot of milk! He also said that milk has a lot of things in it that is not great for brain development. He gave me his website address and told me to read more there. THEN... he mentioned that some people believe that vaccines have something to do with neurological problems in children. Don't ask me why, but when he said that a light came on inside my brain. It was an "A-Ha" moment for me. I listened to him and was determined to do some research and find out all I could.
We started the diet in phases. I thought it was a very radical step and I was kind of skeptical about it. We changed to soy milk and even tried some soy cheese and similar products. She actually did well. All the kids transitioned to soy very easily and I was excited. Within a week, she began to show signs of progress. Her vocabulary doubled! Then after the second week she actually said her first sentence. I was so thrilled!! Could this be a coincidence? Why did a change from milk to soy make such a difference? I was determined to find out!
I did my research and found out that there were many parents out there in the autism community who had similar stories to tell. Traditional medicine does not believe in this and that is why I had never heard about it. Why aren't doctors willing to look into these findings. It's not medicine...that's why. This is a brief explanation of some theories: http://www.autism.org/leakygut.html
My own observation and conclusion is that it's definitely worth a try and it's NOT going to hurt your child if done properly. Many parents already believe that milk, beyond breast milk, is not necessary anyway. Many parents believe that the calcium in milk is not absorbed easily by the body anyway and that there are better ways of getting it. There are also many who believe that there are too many things in milk that are NOT good for kids. In my opinion it's definitely worth a try. Here is some good information about soy milk vs. cow milk: http://ask.yahoo.com/20021106.html
You can do your own research and find thousands of websites devoted towards educating parents about this issue. The main thing to remember is that you will need to make sure that your child is not lacking in any vitamins. That is why Dr. Corbier made sure we put my daughter on supplements when we changed to soy milk. Also, you don't want to go "cold-turkey" when changing a child's diet. Do it slowly and responsibly. You could actually do harm if you changed your child's diet to no milk and no wheat overnight. I will try and remember to do a special post on this controversial diet in the near future. :)
We continued with her speech therapy and when she turned 3 we put her in a local church Mom's Morning Out program. I met with the people and they were so sweet. I explained that she would be getting speech therapy services at the school and they were so accommodating. I felt like it was the perfect place for her and I knew that being around other kids her age would help her with her social skills. I was also impressed with the testing they did. They actually had a "play-based program" and they would test the kids and make sure they were making progress. The classes were small enough that they could individualize the program to meet the children's needs. It was awesome!!
In the end, she progressed to the point that no one knew anything was ever wrong with her. She stopped walking on her tip-toes after she turned 3 and I noticed her staring spells less and less. She matured and was more social. She was able to make and keep friends. It was as if she was another child. There is no "medical explanation" for her recovery. However, there are three things I did. First, we did the speech therapy. Secondly, we changed her diet. Thirdly, we stopped giving her vaccines. Speech therapy alone would not have explained her recovery. In my opinion changing her diet flipped a "switch" of sorts in her brain and she started to benefit from the therapy. Not introducing her body to any more toxins and/or vaccines was another factor that contributed to her recovery. You see.... it was no coincidence.
What happened to my child? I believe that it was vaccine injury. There is no other explanation. She was regressing.... she was showing "signs of autism" and doctors had no conventional solutions for me. She was not speaking....she would grunt or point... she would have tantrums and outbursts because of her frustration. Also, in hindsight I remember that her "episodes" where her feet and hands turned blue occurred at about the time she received her immunizations. This is no coincidence. Now that we know Sarah has Wilson's Disease it makes a little more sense to me. Her body has a metabolic defect. She can't process copper like others. Her ceruloplasmin is extremely low. I did my research and vaccines have tons of chemicals and by-products (such as formaldehyde, anti-freeze, metals, etc....) that probably cannot be excreted as easily for her. It was a cumulative effect on her body. As soon as we stopped vaccinating, then her body was able to start the healing process. She got better.
Okay....so there are two sides to the coin. What about Wilson's Disease? Well... we saw an improvement in her symptoms waaaaaay before we even diagnosed her with Wilson's. So, even though the doctor wants to claim that's the reason... it is not! As a matter of fact, we probably unknowingly gave her copper-rich foods during that time.... and we still saw improvement. Also, what about autism? Well... if she had autism, then we would not have seen such a dramatic change in her. It's true that in some cases, the symptoms do improve with age.... However, they don't ALL go AWAY... they just get BETTER. With her, the symptoms WENT AWAY! That's the difference. Except for the Wilson's, she is perfectly healthy and normal. She has friends and even the teacher has made comments that she is doing great in school.
The most frustrating thing about this is that when I asked the pediatrician about it, he did not even want to entertain the idea. Even after I mentioned that Dr. Corbier had suggested it, he rolled his eyes. I know I am not a doctor, but I am a mother and I know what I saw. I know what I witnessed. I can tell you what happened before my eyes. Now... do you blame me for feeling the way I do? Can you blame me for being so cautious? Do YOU have another explanation? I am all ears. :)
***********************************
"The important thing is not to stop
questioning" ~ Albert Einstein
***********************************
Wednesday, October 1, 2008
Isn't it Ironic....Don't you think?
I was considering changing doctors since my last appointment with my baby. I have fought and fought my feelings and anger inside my heart for so long. I thought that going to my current doctor and having lost my trust in him was probably not a good thing. There have been too many close calls and although I love my primary pediatrician, I just don't like the others in the group.
So... I ventured into another group this afternoon in search of another doctor that might have a more open mind about things. One of my dear friends had suggested I check out HER pediatrician, who happens to be a woman. This doctor sounded wonderful and very open-minded. My friend was able to do just one shot at a time with her kids and was able to speak to her about her concerns. The doctor at one point had even made a comment about how there MIGHT be something to the vaccine-autism link. I thought she sounded very promising.
I had no trouble finding the office. It was located a little closer to home.... that's always a good thing. When I stepped inside I felt very comfortable there. It smelled clean and it looked like a fun place to take my kids. I was also impressed at how they had separate waiting rooms for the sick and well kids... unlike my current group that just divides a big room with a wall to separate them. (I've always thought that was similar to how they used to separate the smoking and non-smoking sections in many restaurants... it's all the same air!) I didn't have to wait very long and that impressed me very much. I wasn't a "paying patient" so I was expecting to have to wait for at least an hour. I waited no more than thirty minutes! They took me to the back and I sat in an examining room to wait for the doctor. I have to admit that I was very anxious and excited at the same time. I was praying that things would work out. It would be one less thing that I would have to worry about.
When the doctor entered the room I could tell that I was going to like her as a person. She was very sweet and humble. I liked the way she spoke to me. It was as if I was speaking to another mother (which I was) and that made me feel like I could relate to her. I told her that she came highly recommended and I wanted to discuss some things with her before making my decision to take my kids there. I told her a bit of history on all the kids. Then I asked her how she felt about doing alternative schedules for vaccines. I explained how I felt about vaccines and how I just wanted to be cautious. I told her that my first three kids all had problems and my fourth is doing great. I was especially careful about explaining Sarah's condition and how her metabolic disorder was definitely an issue.
Well...she didn't get angry or defensive. She calmly told me that they no longer encouraged alternative schedules for vaccines. She said that she had just come from a CDC meeting that discussed the measles problems that they are starting to see and she was concerned. She went on to explain that there was no proof and that she had "prayed about this" and felt that there is no link. She went on to say how she understood my concern but she wanted to be honest with me. I thanked her for her honesty. Then I asked her if they ever split the MMR vaccine. She told me that in the past they had, but they no longer do it. She said that at the meeting they told her that the MMR loses it efficacy if they split it. (What????!!) Anyways, it sounded to me like this "meeting" was more of a "brainwashing for doctors" seminar. How unfortunate!
Luckily, my husband and I had already discussed what we would do if this scenario took place. We agreed that we would continue to see our present doctor and just take the kids for the vaccines. If they get sick we will take our kids to Primed (We know the doctors there and they are WONDERFUL and NEVER have given us any problems about the whole vaccine issue..... As a matter of fact, I asked one of the nurses one time about what I should say when they ask me if my kids are current on their vaccines. She told me that they are "current" as long as we are working on giving it to them and they are not in school yet.) If there is an emergency, we will take them to the ER. My daughter sees a team of doctors at the Children's Hospital so there is no need for her to see her regular pediatrician at all.
I can't help but laugh at the irony of it all. Even though my present doctor doesn't agree with me, at least he still carries out my wishes. In spite of his anger towards my decision, at least he is not hostile towards me. Lastly, although I will never change his mind about things and he has made it hard on me, at least he only expresses his opinion but he is not telling me what I can't do. In the end, the doctor that I was trying to get away from was the one who met our needs the best. Isn't it ironic?
********************************
Some of God's greatest gifts are
unanswered prayers~ Garth Brooks
********************************
So... I ventured into another group this afternoon in search of another doctor that might have a more open mind about things. One of my dear friends had suggested I check out HER pediatrician, who happens to be a woman. This doctor sounded wonderful and very open-minded. My friend was able to do just one shot at a time with her kids and was able to speak to her about her concerns. The doctor at one point had even made a comment about how there MIGHT be something to the vaccine-autism link. I thought she sounded very promising.
I had no trouble finding the office. It was located a little closer to home.... that's always a good thing. When I stepped inside I felt very comfortable there. It smelled clean and it looked like a fun place to take my kids. I was also impressed at how they had separate waiting rooms for the sick and well kids... unlike my current group that just divides a big room with a wall to separate them. (I've always thought that was similar to how they used to separate the smoking and non-smoking sections in many restaurants... it's all the same air!) I didn't have to wait very long and that impressed me very much. I wasn't a "paying patient" so I was expecting to have to wait for at least an hour. I waited no more than thirty minutes! They took me to the back and I sat in an examining room to wait for the doctor. I have to admit that I was very anxious and excited at the same time. I was praying that things would work out. It would be one less thing that I would have to worry about.
When the doctor entered the room I could tell that I was going to like her as a person. She was very sweet and humble. I liked the way she spoke to me. It was as if I was speaking to another mother (which I was) and that made me feel like I could relate to her. I told her that she came highly recommended and I wanted to discuss some things with her before making my decision to take my kids there. I told her a bit of history on all the kids. Then I asked her how she felt about doing alternative schedules for vaccines. I explained how I felt about vaccines and how I just wanted to be cautious. I told her that my first three kids all had problems and my fourth is doing great. I was especially careful about explaining Sarah's condition and how her metabolic disorder was definitely an issue.
Well...she didn't get angry or defensive. She calmly told me that they no longer encouraged alternative schedules for vaccines. She said that she had just come from a CDC meeting that discussed the measles problems that they are starting to see and she was concerned. She went on to explain that there was no proof and that she had "prayed about this" and felt that there is no link. She went on to say how she understood my concern but she wanted to be honest with me. I thanked her for her honesty. Then I asked her if they ever split the MMR vaccine. She told me that in the past they had, but they no longer do it. She said that at the meeting they told her that the MMR loses it efficacy if they split it. (What????!!) Anyways, it sounded to me like this "meeting" was more of a "brainwashing for doctors" seminar. How unfortunate!
Luckily, my husband and I had already discussed what we would do if this scenario took place. We agreed that we would continue to see our present doctor and just take the kids for the vaccines. If they get sick we will take our kids to Primed (We know the doctors there and they are WONDERFUL and NEVER have given us any problems about the whole vaccine issue..... As a matter of fact, I asked one of the nurses one time about what I should say when they ask me if my kids are current on their vaccines. She told me that they are "current" as long as we are working on giving it to them and they are not in school yet.) If there is an emergency, we will take them to the ER. My daughter sees a team of doctors at the Children's Hospital so there is no need for her to see her regular pediatrician at all.
I can't help but laugh at the irony of it all. Even though my present doctor doesn't agree with me, at least he still carries out my wishes. In spite of his anger towards my decision, at least he is not hostile towards me. Lastly, although I will never change his mind about things and he has made it hard on me, at least he only expresses his opinion but he is not telling me what I can't do. In the end, the doctor that I was trying to get away from was the one who met our needs the best. Isn't it ironic?
********************************
Some of God's greatest gifts are
unanswered prayers~ Garth Brooks
********************************
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