For about three years now, I have been sneaking up to my son's room at night and sticking him with a needle. For most of that time I have just hated doing it. Now it is so routine, I get more upset when I can't do it, like if we accidentally run out, or if he isn't asleep enough to stay still enough, even after the numbing cream. The reason being that he is doing so very well, and changing the therapy routine can really throw things off. No B12 can mean emotional melt downs the next day. It can mean climbing under desks at school.
I describe our routine to others as "B12 by injection." The pharmacy that I order it from calls it methylcobal. Every month I spend about $35 dollars on it, and I have it delivered to our door, because the pharmacy we get it from is over an hour away. It comes in a small Styrofoam cooler, which is still really big for how tiny the little bottle is. The bottle is about 1 inch tall. I always have to remember to order syringes, because once I forgot, and I found out that Rite-Aid will not sell them to me. Duh.
I have to keep on a schedule with giving it to him. Every third night, about 20 minutes after bedtime, he is usually in a deep enough sleep that I can put a tiny circle of numbing cream on the injection site and he won't roll over on it. I then go downstairs and set a timer for 20 minutes. At the end of the 20 minutes, I draw the dose up myself, because it is cheaper than getting the syringes pre-filled. I go up to his room, wipe off the numbing cream, and administer the injection just how his doctor's nurse taught me. He does not even know that I do this. If any of you were wondering if I was crazy, why yes, yes I am. I stick my son with needles in the dark.
Showing posts with label biochemical intervention. Show all posts
Showing posts with label biochemical intervention. Show all posts
Thursday, February 2, 2012
Wednesday, November 9, 2011
Supplements
Supplements are an important part of my son's biochemical therapy. His doctor oversees them, and his regimen is unique to him. I confess I cannot tell you off the top of my head why he takes each one. Then his doctor starts talking about the methylation cycle, he starts getting a glassy-eyed, vacant look from me. I can tell you that some of these supplements are to help his gut. I can tell you that they were added one at a time, and I saw improvements with each one. Some of these he takes because his gut does not absorb enough of certain things. Some he takes for this methylation cycle thing. Some are just to support general good nutrition, (things that would help us all function better.)
The blue pill box is for mornings. The purple one is for nights. In addition, he gets Juice Plus+ twice a day, a probiotic twice a day, and zinc at night. Oh yeah, and B12 by injection every 3 days. This regimen is a job in itself for me to maintain.
I once had the experience of Eli being seen by the school psychologist. She asked what he was taking, and so I told her every single little thing, right down to the B12. She tried to hide it, but her look said, "This mom is crazy! I need to save them from their craziness." Yeah, I supplement my son's brain and body with the things that he actually needs instead of pumping him with mind-altering meds with their side effects. I must be nuts. Here is my previous post about this visit.
The blue pill box is for mornings. The purple one is for nights. In addition, he gets Juice Plus+ twice a day, a probiotic twice a day, and zinc at night. Oh yeah, and B12 by injection every 3 days. This regimen is a job in itself for me to maintain.
I once had the experience of Eli being seen by the school psychologist. She asked what he was taking, and so I told her every single little thing, right down to the B12. She tried to hide it, but her look said, "This mom is crazy! I need to save them from their craziness." Yeah, I supplement my son's brain and body with the things that he actually needs instead of pumping him with mind-altering meds with their side effects. I must be nuts. Here is my previous post about this visit.
Tuesday, May 24, 2011
Baby Boy
The arrival or our second child is only weeks away. It seems like it was such a short time ago that we were anticipating the arrival of our first child, who is now six years old. Little did we know of what our journey with him would be! It was like going to an unknown destination, and I have been thinking quite a bit recently about this story I once posted called "Welcome to Holland."
I do not regret that our journey with our son has been different. Holland is a nice place, after all, and he is so much more well than he once was. What I do regret occasionally is that I feel like I lost lots of time with him while he was little and not feeling so well. That is to say, our interactions were not what they could have been for quite a long time. He only appeared to be attached to me when he was little because he had serious separation anxieties. His dad and I were like extensions of him, and he did not call us mom and dad, or anything at all, for many years. We began to see a big turn around with him by the time he was 4. By that time he had been in the DAN! program for about 6 months and he had started ABA therapy.
Our second, yet to be born child is also a boy. I admit I have experienced some anxiety over this, (given that boys are so much more likely to have autism than girls are,) and in fact I really wanted a girl this time for that very reason. The thing about it is though, I have already been to Holland. Figuratively speaking, I already know some of the language, and I already have an itinerary, and I am already packed for the weather. If this second little boy is destined to have autism despite my best efforts to prevent it, he will feel better sooner, and both directly and indirectly he will learn many valuable things from his brother.
And so with that said, here is to the journey, and where ever it may lead us.
I do not regret that our journey with our son has been different. Holland is a nice place, after all, and he is so much more well than he once was. What I do regret occasionally is that I feel like I lost lots of time with him while he was little and not feeling so well. That is to say, our interactions were not what they could have been for quite a long time. He only appeared to be attached to me when he was little because he had serious separation anxieties. His dad and I were like extensions of him, and he did not call us mom and dad, or anything at all, for many years. We began to see a big turn around with him by the time he was 4. By that time he had been in the DAN! program for about 6 months and he had started ABA therapy.
Our second, yet to be born child is also a boy. I admit I have experienced some anxiety over this, (given that boys are so much more likely to have autism than girls are,) and in fact I really wanted a girl this time for that very reason. The thing about it is though, I have already been to Holland. Figuratively speaking, I already know some of the language, and I already have an itinerary, and I am already packed for the weather. If this second little boy is destined to have autism despite my best efforts to prevent it, he will feel better sooner, and both directly and indirectly he will learn many valuable things from his brother.
And so with that said, here is to the journey, and where ever it may lead us.
Friday, April 29, 2011
The Chocolate Effect, 14 years later
Once I wrote a little story about a teenage girl and her brother with autism who got his hands on a piece of chocolate. Although the story was fictional, the events and conditions in the story were based on my own experiences. Those experiences I had as a child really framed my mind for receiving the DAN! program as treatment for my son because I knew firsthand the effects that certain foods/toxins had on my brother. (Read The Chocolate Effect here.)
Now fast forward 14 or so years later, I am now an adult, (well...sort of!) and my brother is 18 years old and is spending some time staying with my family along with our mother. On Easter Sunday they both attended church with us. My brother received such great treatment and acceptance that he attended his Sunday School classes on his own. The teacher for his first Sunday School class approached me, saying that she had cupcakes for the class and she didn't know if my brother is in the same treatment as my son. I told her no, but thank you and PLEASE scrape the icing off of his cupcake. (Too much sugar is a HUGE trigger for bad behavior!) My brother seemed to do pretty well on Sunday, but on Monday, his behavior took a turn for the worse.
On Tuesday morning he was telling mom something like this: "In my class on Sunday I got a rice crispy treat shaped like an egg and it had m&ms in it. And I ate the whole thing! I was hoping that I would get to miss school! Too bad I was wrong!" A sweet teacher, (who did not know about the chocolate effect,) in his second Sunday School had given this to him. Mom was making him go to school, and this was his confession after he realized that all of his plotting, horrible behavior, and sabotaging his own gut came to no avail.
It has been a long week with the uptight, much more easily triggered teenage brother around. The chocolate effect wore off to a good extent by Thursday, and mom was actually able to get him to take a shower. (Thank goodness!) This morning I heard "Good Morning, Eli," when my son woke up and walked into the other room. In my story "The Chocolate Effect," I had the chocolate effect wear off in just one day. I was trying to make the story a good balance of positive as well as negative, but in reality, it takes many days to wear off.
My purpose in writing this is to point out that food can be a psychological trigger for abnormal behavior. Even for myself, I have food sensitivities and I can have altered, depressed moods if I eat gluten or too much of something else on my "no" list. Looking back, I just wonder at my son's old pediatrician, who is a very sweet man, but basically told me I should not take my autistic toddler off of milk. How much better our son's life is nowdays with special diet and biochemical intervention!
Now fast forward 14 or so years later, I am now an adult, (well...sort of!) and my brother is 18 years old and is spending some time staying with my family along with our mother. On Easter Sunday they both attended church with us. My brother received such great treatment and acceptance that he attended his Sunday School classes on his own. The teacher for his first Sunday School class approached me, saying that she had cupcakes for the class and she didn't know if my brother is in the same treatment as my son. I told her no, but thank you and PLEASE scrape the icing off of his cupcake. (Too much sugar is a HUGE trigger for bad behavior!) My brother seemed to do pretty well on Sunday, but on Monday, his behavior took a turn for the worse.
On Tuesday morning he was telling mom something like this: "In my class on Sunday I got a rice crispy treat shaped like an egg and it had m&ms in it. And I ate the whole thing! I was hoping that I would get to miss school! Too bad I was wrong!" A sweet teacher, (who did not know about the chocolate effect,) in his second Sunday School had given this to him. Mom was making him go to school, and this was his confession after he realized that all of his plotting, horrible behavior, and sabotaging his own gut came to no avail.
It has been a long week with the uptight, much more easily triggered teenage brother around. The chocolate effect wore off to a good extent by Thursday, and mom was actually able to get him to take a shower. (Thank goodness!) This morning I heard "Good Morning, Eli," when my son woke up and walked into the other room. In my story "The Chocolate Effect," I had the chocolate effect wear off in just one day. I was trying to make the story a good balance of positive as well as negative, but in reality, it takes many days to wear off.
My purpose in writing this is to point out that food can be a psychological trigger for abnormal behavior. Even for myself, I have food sensitivities and I can have altered, depressed moods if I eat gluten or too much of something else on my "no" list. Looking back, I just wonder at my son's old pediatrician, who is a very sweet man, but basically told me I should not take my autistic toddler off of milk. How much better our son's life is nowdays with special diet and biochemical intervention!
Sunday, February 6, 2011
The Cost of Biochemical Intervention
I remember the day that I first picked up "Changing the World of Autism" By Dr. Bryan Jepson, and the way that it made me feel. I ate that book up, and I felt it was a gift from my kind Heavenly Father to help us help Eli. And those feelings of gratitude and conviction were what we needed, because we found that biochemical intervention is taxing on parents on many levels, and just let me say that we were not well off. We were still getting Daddy through college at the time we started the program.
Just afew short years later, our lives are so different. Meltdowns are an extremely rare thing, and our boy talks in a communicative way. And man, can he read. I am positive I could not read that well until late first grade, and he is still in kindergarten. We have been blessed with a teaching job for Eli's Daddy, and we are looking into buying our first little home. This purchase is a huge step for us, and so I have been reviewing our expenses, and where does our money go to. Our grocery budget is $150-$200 dollars a month more than we would otherwise spend if not doing special medical diets. I have a credit card that I put Eli's supplements on, and I hate seeing the balance occasionally go up some months rather than go down. However, when I review this part of our spending, I realize that we have always been blessed to be able to make it through, and there is no going back. He is so much more well and so much happier now.
All these thoughts really take me back to when I read "Mother Warriors" by Jenny McCarthy. It was on sale for $4 and we were curious, so we bought it. My husband said all it did for him was make him sad. It had some value for me as I saw the practical side of other parent's struggle to implement biochemical intervention, and their successes. The part of the book that really blew us away was the part that explained the average cost of raising a child with autism. Let's just say that the sum she offered as "average" was afew times our annual income.
So just let me say, you can do this on a modest income. We do.
Just as a side note, another cost of biochemical intervention is being weird. Yeah, basically to the medical community in general, I am a weird, misguided parent. I have already been lectured by a dentist about how 'it is better to err on the side of caution' when it comes to the decision of giving my son his artificial fluoride. And just recently I was given a "news flash" at a pregnancy check up about how 'in those recent news stories the research was fraud and vaccines really don't cause ADD and other things.' Well, I don't know about all of that, but seriously all I said was that I didn't want to give my child hep B at birth. Sheesh.
Just afew short years later, our lives are so different. Meltdowns are an extremely rare thing, and our boy talks in a communicative way. And man, can he read. I am positive I could not read that well until late first grade, and he is still in kindergarten. We have been blessed with a teaching job for Eli's Daddy, and we are looking into buying our first little home. This purchase is a huge step for us, and so I have been reviewing our expenses, and where does our money go to. Our grocery budget is $150-$200 dollars a month more than we would otherwise spend if not doing special medical diets. I have a credit card that I put Eli's supplements on, and I hate seeing the balance occasionally go up some months rather than go down. However, when I review this part of our spending, I realize that we have always been blessed to be able to make it through, and there is no going back. He is so much more well and so much happier now.
All these thoughts really take me back to when I read "Mother Warriors" by Jenny McCarthy. It was on sale for $4 and we were curious, so we bought it. My husband said all it did for him was make him sad. It had some value for me as I saw the practical side of other parent's struggle to implement biochemical intervention, and their successes. The part of the book that really blew us away was the part that explained the average cost of raising a child with autism. Let's just say that the sum she offered as "average" was afew times our annual income.
So just let me say, you can do this on a modest income. We do.
Just as a side note, another cost of biochemical intervention is being weird. Yeah, basically to the medical community in general, I am a weird, misguided parent. I have already been lectured by a dentist about how 'it is better to err on the side of caution' when it comes to the decision of giving my son his artificial fluoride. And just recently I was given a "news flash" at a pregnancy check up about how 'in those recent news stories the research was fraud and vaccines really don't cause ADD and other things.' Well, I don't know about all of that, but seriously all I said was that I didn't want to give my child hep B at birth. Sheesh.
Sunday, October 17, 2010
Kitchen Gadgets
Here are some recently acquired kitchen gadgets of mine:
manual grain grinder
I bought the hand grinder at the Provo Macey's for $50. Quite a steal, really. Orem Macey's in Utah Valley charges $69 and I heard the Pleasant Grove charges $79. The whole idea was to save .70 cents on white rice flour and 1 dollar on brown rice flour per pound. Quite a significant savings when taking into consideration the price I can buy the rice for in bulk on a good sale. This does take time and some arm, but for the money it is a great grinder. One day I will be getting a good electric model and using this manual one for emergency/back-up purposes.
apple corer/peeler/slicer
I also got this apple/corer/peeler/slicer gadget at the Provo Macey's grocery store. It was just under $20. I am really really hoping to make some apple sauce this year. I used one of these gadgets to make applesauce with a friend years ago, and have wanted one of my own ever since. Homemade applesauce is so very heavenly! Both gadgets are Victorio brand.
It seems as though I blog quite alot about food or related topics. What can I say? I am always thinking about food. I am always planning, cooking, and cleaning, all because of food. It really is the whole aspect of cutting gluten and other common foods, and then trying to eat this way on a shoe string budget. (Or at least as cheaply as possible, while doing my best to get good nutrition down my family. Trouble is, gluten free/dairy free can be an expensive way to eat.) I am always looking for ways to cut down on the grocery budget without compromising fresh fruits/veggies and without making us bored to death of our food. I have looked into several strategies.
Generally, couponing to save money on groceries does not work really well for me. Usually, coupons put out by manufacturers are not for food that we would normally eat, or for what we should on our diet. However, my husband does get sent to work with lunch food that I used coupons on. (He does not have the diet issues of our son and myself and it helps him resist the urge to buy extra snacks while on the road.)
GF/CF mixes are a no go for me. They are convenient, they save tons of time, but really, they are horrid for my budget, (very expensive,) and usually contain one or more of our "eat seldom and with care" list. (Corn, soy, and sugar are among the "eat with care" list.) I do not even buy flour mixes. I mix my own flours. If rice, I grid it myself, too.
Canning is something I have taken to this season. When you know people who can hook you up with free fruit for the picking, that is a great way to fill the pantry. True, it is not the same as eating fresh, but there are many wonderful, tasty, and nutritious things that can be made from my stockpile.
My ultimate solution for our diet/budget situation: eat simple food, and make everything from scratch. Eating simple is for my sanity, our health, and our budget. Making it all myself insures that I know what is in it, and that I am spending even less.
manual grain grinder
I bought the hand grinder at the Provo Macey's for $50. Quite a steal, really. Orem Macey's in Utah Valley charges $69 and I heard the Pleasant Grove charges $79. The whole idea was to save .70 cents on white rice flour and 1 dollar on brown rice flour per pound. Quite a significant savings when taking into consideration the price I can buy the rice for in bulk on a good sale. This does take time and some arm, but for the money it is a great grinder. One day I will be getting a good electric model and using this manual one for emergency/back-up purposes.
apple corer/peeler/slicer
I also got this apple/corer/peeler/slicer gadget at the Provo Macey's grocery store. It was just under $20. I am really really hoping to make some apple sauce this year. I used one of these gadgets to make applesauce with a friend years ago, and have wanted one of my own ever since. Homemade applesauce is so very heavenly! Both gadgets are Victorio brand.
It seems as though I blog quite alot about food or related topics. What can I say? I am always thinking about food. I am always planning, cooking, and cleaning, all because of food. It really is the whole aspect of cutting gluten and other common foods, and then trying to eat this way on a shoe string budget. (Or at least as cheaply as possible, while doing my best to get good nutrition down my family. Trouble is, gluten free/dairy free can be an expensive way to eat.) I am always looking for ways to cut down on the grocery budget without compromising fresh fruits/veggies and without making us bored to death of our food. I have looked into several strategies.
Generally, couponing to save money on groceries does not work really well for me. Usually, coupons put out by manufacturers are not for food that we would normally eat, or for what we should on our diet. However, my husband does get sent to work with lunch food that I used coupons on. (He does not have the diet issues of our son and myself and it helps him resist the urge to buy extra snacks while on the road.)
GF/CF mixes are a no go for me. They are convenient, they save tons of time, but really, they are horrid for my budget, (very expensive,) and usually contain one or more of our "eat seldom and with care" list. (Corn, soy, and sugar are among the "eat with care" list.) I do not even buy flour mixes. I mix my own flours. If rice, I grid it myself, too.
Canning is something I have taken to this season. When you know people who can hook you up with free fruit for the picking, that is a great way to fill the pantry. True, it is not the same as eating fresh, but there are many wonderful, tasty, and nutritious things that can be made from my stockpile.
My ultimate solution for our diet/budget situation: eat simple food, and make everything from scratch. Eating simple is for my sanity, our health, and our budget. Making it all myself insures that I know what is in it, and that I am spending even less.
Sunday, March 28, 2010
Melatonin
Melatonin is something that our bodies produce to regulate our sleep patterns. People who have autism often have insufficient levels of melatonin in their bodies. One of the first things that we did when our son was diagnosed with autism was put him on a nightly little dose of melatonin. When I finally got my hands on Changing the Course of Autism by Dr. Bryan Jepson, I saw that melatonin was one of the suggested biochemical intervention treatments. I thought, Oh good. We are already going something right.
We were both working at the time and my husband was going to school full time. We were desperate to solve the sleep disturbance issues that Eli had that went along with his condition. He was constantly getting up in the middle of the night and staying awake until the wee hours of the morning. We were so tired!
We got the idea of using the small dose of melatonin from my mother. My brother with autism has been using melatonin most of his life, and without it his sleep is very disregulated. We started with a quarter of a milligram dose and worked it up by small increments night by night until he was ready to go to bed half an hour after taking it, with his regular bedtime routine, of course. In the beginning I think he only took like one tablet each night, which was half a milligram.
Looking back, I realize that the smartest thing to do would have been to consult his doctor. The problem was that his pediatrician, who was really quite good, knew little about autism. He could not tell me what to do for Eli's diarrhea or other symptoms. He did know enough to recognize some of the autistic behaviors in children and send us to get a diagnosis, and for that we are ever so grateful.
We like the Nutrition Now Melatonin. We like it because:
-It is in a chewable peppermint tablet
-It is easy to split with a pill splitter
-It is in a half milligram dose, which makes it easy to give only the littlest dose needed.
-Nothing artificial and no gluten, milk, or soy
Nutrition Now used to sell their own products on a very nice site and with great service. Now it is only available through supplement distributing companies. The site I currently use is HerbsMD.
I am providing this link for some friends who have asked to have this address.Click here to go to the Nutrition Now Melatonin listing on HerbsMD.com
Disclaimer: As you may be aware, I am not a medical professional and I am not qualified to give medical advice of any kind. I am providing this information for my readers as a piece of our autism journey.
We were both working at the time and my husband was going to school full time. We were desperate to solve the sleep disturbance issues that Eli had that went along with his condition. He was constantly getting up in the middle of the night and staying awake until the wee hours of the morning. We were so tired!
We got the idea of using the small dose of melatonin from my mother. My brother with autism has been using melatonin most of his life, and without it his sleep is very disregulated. We started with a quarter of a milligram dose and worked it up by small increments night by night until he was ready to go to bed half an hour after taking it, with his regular bedtime routine, of course. In the beginning I think he only took like one tablet each night, which was half a milligram.
Looking back, I realize that the smartest thing to do would have been to consult his doctor. The problem was that his pediatrician, who was really quite good, knew little about autism. He could not tell me what to do for Eli's diarrhea or other symptoms. He did know enough to recognize some of the autistic behaviors in children and send us to get a diagnosis, and for that we are ever so grateful.
We like the Nutrition Now Melatonin. We like it because:
-It is in a chewable peppermint tablet
-It is easy to split with a pill splitter
-It is in a half milligram dose, which makes it easy to give only the littlest dose needed.
-Nothing artificial and no gluten, milk, or soy
Nutrition Now used to sell their own products on a very nice site and with great service. Now it is only available through supplement distributing companies. The site I currently use is HerbsMD.
I am providing this link for some friends who have asked to have this address.Click here to go to the Nutrition Now Melatonin listing on HerbsMD.com
Disclaimer: As you may be aware, I am not a medical professional and I am not qualified to give medical advice of any kind. I am providing this information for my readers as a piece of our autism journey.
Friday, February 19, 2010
Dear BYU Psycology Department
Dear Dr. Mikle South,
Hello, my name is Celeste. I am BYU alumni and a Giant Steps parent. I attended the presentation that you and your students put on for the parents of the Giant Steps Preschool several months back. I was impressed with the work your students presented. You mentioned that as part of your research you meet with many parents and note their concerns. I have felt since that time a need and a desire to express to you some things about my journey with autism.
I have lived with autism in my family since 1993, when my brother with autism was born. Now I am the parent of a Giant Steps student. For most of those 17 years when my brother was growing up, I believed that autism is a neurological disorder only and that education is really the only thing that could help a person with autism. After my little son was diagnosed I studied a book called Changing the Course of Autism by Dr. Bryan Jepson. Dr. South, this book was revelation to my mind. I explained the behaviors and phases of my brother over all those years, and also the ones that were emerging in my son. Now I believe that autism is a disease of the body greatly affects the brain. Meaning, persons with a genetic tendency slip into autism when their bodies cannot cope with all of the toxins that enter it.
Since the summer of 2008 my son has been seeing Dr. David Voss at the Freedom Medical Center who treats his condition medically. My son eats gluten free, casein free, and usually sugar free. He is on a variety of dietary supplements that are closely monitored by his doctor. The results over time have been eye contact, communication, and awareness. Giant Steps has of course accelerated his progress even more. This biochemical intervention program is difficult to do, but it is much easier than having a child who is more severely autistic. When I am in a group of Giant Steps parents and they talk about their children’s different troubling behaviors, (such as screaming, running away, and making family life difficult in other ways,) I usually find myself thinking, “I grew up with that, and my son used to be just like that, but not nearly so much now.”
Unfortunately the compilation of research that Dr. Bryan Jepson presents in his book is a bit sparse. There are many gaps and many topics that need more looking at. There is no research whatsoever touching this program from psychology professionals as far as I am aware.
And so Dr. South, it is my plea that If you have any students that are at all interested in pursuing this area in their graduate studies, please encourage them. More substantial research in this area from a department such as yours would do a world of good, not only for children with autism in Utah , but for people with autism everywhere.
Thank you very much for your work in support of Giant Steps. I am very appreciative of what you and your students do.
Celeste Jean
This is the email I sent to Dr. South today. I know it is a bit presumptuous. However, here in Utah we have one of the highest rates of autism in the entire country, and I feel that this professor and his team of graduates have a great deal of influence. Already they do research that justifies to the minds of lawmakers the funding of the Giant Steps Preschool.
Yes, I am hopeful enough to think my small efforts could make a difference in his student's studies. At the least I know I will receive a short, kind reply. I have met Dr. South. He is a nice, fun loving guy. (This is the man who held a free drawing for candy bars at the above-mentioned presentation meeting. LOL!)
Hello, my name is Celeste. I am BYU alumni and a Giant Steps parent. I attended the presentation that you and your students put on for the parents of the Giant Steps Preschool several months back. I was impressed with the work your students presented. You mentioned that as part of your research you meet with many parents and note their concerns. I have felt since that time a need and a desire to express to you some things about my journey with autism.
I have lived with autism in my family since 1993, when my brother with autism was born. Now I am the parent of a Giant Steps student. For most of those 17 years when my brother was growing up, I believed that autism is a neurological disorder only and that education is really the only thing that could help a person with autism. After my little son was diagnosed I studied a book called Changing the Course of Autism by Dr. Bryan Jepson. Dr. South, this book was revelation to my mind. I explained the behaviors and phases of my brother over all those years, and also the ones that were emerging in my son. Now I believe that autism is a disease of the body greatly affects the brain. Meaning, persons with a genetic tendency slip into autism when their bodies cannot cope with all of the toxins that enter it.
Since the summer of 2008 my son has been seeing Dr. David Voss at the Freedom Medical Center who treats his condition medically. My son eats gluten free, casein free, and usually sugar free. He is on a variety of dietary supplements that are closely monitored by his doctor. The results over time have been eye contact, communication, and awareness. Giant Steps has of course accelerated his progress even more. This biochemical intervention program is difficult to do, but it is much easier than having a child who is more severely autistic. When I am in a group of Giant Steps parents and they talk about their children’s different troubling behaviors, (such as screaming, running away, and making family life difficult in other ways,) I usually find myself thinking, “I grew up with that, and my son used to be just like that, but not nearly so much now.”
Unfortunately the compilation of research that Dr. Bryan Jepson presents in his book is a bit sparse. There are many gaps and many topics that need more looking at. There is no research whatsoever touching this program from psychology professionals as far as I am aware.
And so Dr. South, it is my plea that If you have any students that are at all interested in pursuing this area in their graduate studies, please encourage them. More substantial research in this area from a department such as yours would do a world of good, not only for children with autism in Utah , but for people with autism everywhere.
Thank you very much for your work in support of Giant Steps. I am very appreciative of what you and your students do.
Celeste Jean
This is the email I sent to Dr. South today. I know it is a bit presumptuous. However, here in Utah we have one of the highest rates of autism in the entire country, and I feel that this professor and his team of graduates have a great deal of influence. Already they do research that justifies to the minds of lawmakers the funding of the Giant Steps Preschool.
Yes, I am hopeful enough to think my small efforts could make a difference in his student's studies. At the least I know I will receive a short, kind reply. I have met Dr. South. He is a nice, fun loving guy. (This is the man who held a free drawing for candy bars at the above-mentioned presentation meeting. LOL!)
Thursday, November 12, 2009
Parent Training
My son's autism preschoool has parent training nights and I think it is so wonderful because parent education makes all the difference. Tonight after coming home from one, however, I have to admit I am alittle frustrated. Some parents were discussing "the diet" and basically putting down biochemical intervention. It was obvious that they had not tried to educate themselves on it. I told them I have been doing biochemical intervention for a year, I told them about the monumental difference (his social smile, understanding discipline, etc.) I said there is a book they can read, (Changing the Course of Autism, by Dr. Bryan Jepson,) and that I am willing to talk to anyone about it. After that I tried to keep my mouth closed. It was hard because I feel like even if they choose not to do it, they should not discredit it. To me that is wrong. One parent approached me afterward, and she understood exactly how I felt! "Some people are so ignorant about food," she said. I can't explain how relieved I am that there is another parent like me in the group and I look forward to talking to her again on the subject.
One of the handouts we got tonight was a little story. I read it once in Jenny McCarthy's Mother Warriors book, and I have to tell you it never looses significance for me. I think the author got it head on.
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
One of the handouts we got tonight was a little story. I read it once in Jenny McCarthy's Mother Warriors book, and I have to tell you it never looses significance for me. I think the author got it head on.
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Monday, August 31, 2009
Why, Mom?
My son approached me while I was at the sewing desk, so I greeted him and told him what I was doing. "Why Mom?" was his response, so I calmly told him more about it. Really, on the inside, I was just thinking, "DID HE JUST SAY THAT??"
By the time most children are the age of four, they have already been tormenting their parents with the 'why' question for quite some time. I just heard it from my son for the first time about 2 weeks ago when this incident happened. Parents of typical kids: be grateful to hear the perpetually asked question. Apparently it is very important for a child's development. I haven't yet learned all the details of 'why' yet. :)
In the meantime, I am hoping to encourage the 'why' question more often.
In other news, this week is another Low Dose Antigen (LDA) injection. My son's DAN! doc is the only one that does these, but he is very active in the conferences and so I hope that many other doctors learn about it from him. The LDA helps my son not be so sensitive to things in the environment and also foods that bother him. It is very safe, it simply helps him build a tolerance. Parents of autistic children know: These kids are sensitive! A special test showed that my son was sensitive to many common foods, and soy especially was almost off the chart!
Preparing for the LDA includes eliminating fish oils from supplement regimen two days before, and eliminating supplements all together for three days, the day before, the day of, and the day after the injection. Fish oil is still avoided during the week after. Also during the supplement free days, he has to be off of chocolate, eggs, wheat, sugar, corn, and milk. I have to admit though, that we usually never give him those things anyway, except the egg. I'll have to remember that when I'm making pancakes in the morning...
By the time most children are the age of four, they have already been tormenting their parents with the 'why' question for quite some time. I just heard it from my son for the first time about 2 weeks ago when this incident happened. Parents of typical kids: be grateful to hear the perpetually asked question. Apparently it is very important for a child's development. I haven't yet learned all the details of 'why' yet. :)
In the meantime, I am hoping to encourage the 'why' question more often.
In other news, this week is another Low Dose Antigen (LDA) injection. My son's DAN! doc is the only one that does these, but he is very active in the conferences and so I hope that many other doctors learn about it from him. The LDA helps my son not be so sensitive to things in the environment and also foods that bother him. It is very safe, it simply helps him build a tolerance. Parents of autistic children know: These kids are sensitive! A special test showed that my son was sensitive to many common foods, and soy especially was almost off the chart!
Preparing for the LDA includes eliminating fish oils from supplement regimen two days before, and eliminating supplements all together for three days, the day before, the day of, and the day after the injection. Fish oil is still avoided during the week after. Also during the supplement free days, he has to be off of chocolate, eggs, wheat, sugar, corn, and milk. I have to admit though, that we usually never give him those things anyway, except the egg. I'll have to remember that when I'm making pancakes in the morning...
Sunday, August 23, 2009
The Move
I haven't posted for awhile because of all the chaos of our recent move. It is all over though, and we are happy with our new place! The reason for our move was the autism preschool located in Orem, Utah, called Giant Steps. It is public, but it is funded by the Wasatch Mental Health Department. Translation: it is free and the program is cutting edge. The downside is that our son had to be on the waiting list for this program for 2 years. We had to be living in Utah County for him to attend, but that was OK because anything out of the county was just too far to commute for a one car family. So here we are! This program is totally worth the move and we are pumped! It is an ABA based program, (although they will use whatever method works for the individual,) and it is four days a week, with full school days!
Our last move was back at the end of December of last year when we moved north in order to complete hubby's education. That move was hard on Eli, as you would expect for a young one with autism. We had lots of uncooperative behavior, vocal outbursts, sleep disturbances, etc. He stopped being manageable with taking supplements for a while there, too, but we kept trying. Once we started getting the supplements down him again, things started getting better, and then he started school at the public school there, and things got even better. We have kept with the biochemical intervention for this whole year this last month and let me tell you how great he is doing! Eli now calls me "mom" and his dad "dad." His vocabulary is growing everyday. If he is looking for a favorite toy train he will say "Gordon go?" He tells me about things in his little shows he likes to watch. He is starting to have more and more of a social smile. This recent move has been such a switch from the one back in December! No regression at all.
Eli had some very kind little friends in our town we lived in up north who taught him so much about interaction, playing and friends. We miss all of you sweet little people! These are some pictures to show his friends how happy Eli is at the new place. There is a swing in the backyard that is cut from an old tire.
Our last move was back at the end of December of last year when we moved north in order to complete hubby's education. That move was hard on Eli, as you would expect for a young one with autism. We had lots of uncooperative behavior, vocal outbursts, sleep disturbances, etc. He stopped being manageable with taking supplements for a while there, too, but we kept trying. Once we started getting the supplements down him again, things started getting better, and then he started school at the public school there, and things got even better. We have kept with the biochemical intervention for this whole year this last month and let me tell you how great he is doing! Eli now calls me "mom" and his dad "dad." His vocabulary is growing everyday. If he is looking for a favorite toy train he will say "Gordon go?" He tells me about things in his little shows he likes to watch. He is starting to have more and more of a social smile. This recent move has been such a switch from the one back in December! No regression at all.
Eli had some very kind little friends in our town we lived in up north who taught him so much about interaction, playing and friends. We miss all of you sweet little people! These are some pictures to show his friends how happy Eli is at the new place. There is a swing in the backyard that is cut from an old tire.
Thursday, July 2, 2009
Immunizations
I had an experience afew weeks ago that I have been thinking about ever since.
I went to see a friend who is an autism sibling like me who had a new baby, about one month old. That little guy was such a doll, and so aware. He could tell that someone that was not mom or dad was holding him, but he decided he could tolerate me after afew minutes. I felt such a connection with the little guy, with the exception of weight and looks, he was just like my little boy at that age... behaved in the same ways. I was so excited I told my husband all about him when I got home. Then he asked me, "Have they been doing immunizations?" And that was all it took for me to sit on my couch and cry for awhile. My husband understood what was wrong and just lovingly sat there with me.
I've spoken before about how I sometimes think about things I would have done differently as a parent in my Mother's Day post. Immunizations is one of those things. I wish I had not been so unaware. Maybe my son would have had less symptoms and had been able to enjoy life more from an early age if I had waited and watched him for symptoms first, waited for safer immunizations, or simply avoided immunizations all together.
Eli has been in biochemical intervention for one year this month. Biochemical intervention has made a difference, even though we can't afford even half the therapies we wold like to have him in. None of his therapies are covered by insurance, and his diet and supplements are hard for us to keep up with. Despite this, Eli can interact in ways he couldn't before, and finds happiness in things he didn't before. (During the drafting of this post he signed "dance" along with a verbal approximation and he grabbed my hands and we danced around the living room!)Previous to Eli seeing a DAN! doctor, his father and I read "Changing the Course of Autism" by Dr. Bryan Jepson. The experience of reading this book was amazing. It is such a compilation of research. It explained to me things that I saw going on with my son and my brother, and the autism community in general, and I was instantly converted.
Now understanding the connection between genetics and autism, and also immunizations and autism due in part to heavy metals, I am appalled to admit that Eli has had the "full schedule" of shots up until the age of 24 months, flu shots, plus he was enrolled in one immunization study. (The doctor, who had children of his own, said that the study was one he would do, and I was way too trusting back then.) My son now has an immunization waiver which allows him to attend public school.
To all the people reading this thinking, "this girl is off her rocker," I want to tell you something: I was once you. Consider the big business that has been built around the immunization program, and what the business implications may be to said big business if each child in the country had one less mercury infused immunization. Consider the government all these years in supporting this big business by requiring children to have a full schedule of immunizations in order to go to school. Then consider that the CDC can't seem to recognize the evidence right in front of them. So I put it to you, I am not a professional after all. Tell me, do these dots deserve to be connected?
Here's an interesting video of CDC accidentally admitting there is a link between autism and immunizations. (I am indebted to Ginger's blog, www.advenduresinautism.blogspot.com for this link.)
Parents, please educate yourselves. Let your mother/father instincts guide you.
"The more I see of the world, the more am I dissatisfied with it; and every day confirms my belief [. . .] of the little dependence that can be placed on the appearance of merit or sense."
Elizabeth Bennett in Jane Austen's Pride and Prejudice
I went to see a friend who is an autism sibling like me who had a new baby, about one month old. That little guy was such a doll, and so aware. He could tell that someone that was not mom or dad was holding him, but he decided he could tolerate me after afew minutes. I felt such a connection with the little guy, with the exception of weight and looks, he was just like my little boy at that age... behaved in the same ways. I was so excited I told my husband all about him when I got home. Then he asked me, "Have they been doing immunizations?" And that was all it took for me to sit on my couch and cry for awhile. My husband understood what was wrong and just lovingly sat there with me.
I've spoken before about how I sometimes think about things I would have done differently as a parent in my Mother's Day post. Immunizations is one of those things. I wish I had not been so unaware. Maybe my son would have had less symptoms and had been able to enjoy life more from an early age if I had waited and watched him for symptoms first, waited for safer immunizations, or simply avoided immunizations all together.
Eli has been in biochemical intervention for one year this month. Biochemical intervention has made a difference, even though we can't afford even half the therapies we wold like to have him in. None of his therapies are covered by insurance, and his diet and supplements are hard for us to keep up with. Despite this, Eli can interact in ways he couldn't before, and finds happiness in things he didn't before. (During the drafting of this post he signed "dance" along with a verbal approximation and he grabbed my hands and we danced around the living room!)Previous to Eli seeing a DAN! doctor, his father and I read "Changing the Course of Autism" by Dr. Bryan Jepson. The experience of reading this book was amazing. It is such a compilation of research. It explained to me things that I saw going on with my son and my brother, and the autism community in general, and I was instantly converted.
Now understanding the connection between genetics and autism, and also immunizations and autism due in part to heavy metals, I am appalled to admit that Eli has had the "full schedule" of shots up until the age of 24 months, flu shots, plus he was enrolled in one immunization study. (The doctor, who had children of his own, said that the study was one he would do, and I was way too trusting back then.) My son now has an immunization waiver which allows him to attend public school.
To all the people reading this thinking, "this girl is off her rocker," I want to tell you something: I was once you. Consider the big business that has been built around the immunization program, and what the business implications may be to said big business if each child in the country had one less mercury infused immunization. Consider the government all these years in supporting this big business by requiring children to have a full schedule of immunizations in order to go to school. Then consider that the CDC can't seem to recognize the evidence right in front of them. So I put it to you, I am not a professional after all. Tell me, do these dots deserve to be connected?
Here's an interesting video of CDC accidentally admitting there is a link between autism and immunizations. (I am indebted to Ginger's blog, www.advenduresinautism.blogspot.com for this link.)
Parents, please educate yourselves. Let your mother/father instincts guide you.
"The more I see of the world, the more am I dissatisfied with it; and every day confirms my belief [. . .] of the little dependence that can be placed on the appearance of merit or sense."
Elizabeth Bennett in Jane Austen's Pride and Prejudice
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