Autism: Eight Questions Dr. Nicole has for Parents

By Dr. Nicole Sundene I won’t even pretend to be an expert on autism, but since this great group of autism blogging moms found me here at the kitchen table, I have a few questions of my own…. Below is a brief interview I did with one parent of a child diagnosed with autism, and if you would like to copy and paste the questions in to the comments section and share your own answers either anonymously or publicly it would greatly help me while I research the latest biochemistry on autism, vaccines, diets, vitamins, low homocysteine, and so forth.  Also other doctors and health care professional subscribed to my website will benefit. Please share any other info you think would be helpful beyond my very basic questions, please by all means do so…I sincerely believe that the parents are the experts on this topic and even though April is “Autism Awareness Month,” author Tara McClintick and I decided that autism continues 365 days a year….so we are going to keep talking about this important and ever growing “epidemic” at the kitchen table. #1 Did you have a difficult time getting pregnant? Yes. We were childless for 9 years and I had two or three unsuccessful cervical bypass procedures. I also had one ectopic pregnancy prior to the birth of Read more

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Is Autism Genetic? It’s NOT a Fight, It’s Our Future

Author: Tara MClintick Is autism a genetic condition? The scientific evidence definitely shows genetics are involved. The fact that males are diagnosed at a ratio of 4:1 to females points to a genetic piece. Identical twins having a higher concordance than fraternal twins also shows genetic significance. Genetics are not the end of the story, however. The more important question in regard to the genetic piece of the autism puzzle is “Now what?” I have no problem with science trying to understand and explain the possibilities of genetics’ role in regard to the current increase in autism we are having. As long it’s not being used as an excuse to dismiss society’s responsibility in the matter. Please, do not dismiss autism as if there is nothing that can be done due to the genetic piece of the puzzle. We ALL have genes. Obesity, freckles, near-sightedness, hair color, diabetes, – genes play a role in just about everything. That does not, however, mean that there is nothing that can be done about the number of children who are struggling to master even the most basic daily functions. My son is 13, and he Read more

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Researchers Find First Signs of Autism Even in Infancy

“Researchers Find First Signs of Autism Even in Infancy.”

Upon hearing this title, I immediately thought of a baby’s first year of life. In my personal experience, my son’s first year was smooth sailing except for some “annoying” ear infections and food allergies.

It was the second year of his life, around 14-17 months (as mentioned), when things seemed to change for my son. That’s when I really became concerned. No more peek-a-boo. No more pretending with a telephone. Attempts to say words and interest in other people quickly seemed to decrease and then disappear.

I fully agree that earlier detection and diagnosis of autism would be beneficial. Even in my case, knowing what autism looked like in later years, I did not realize that the challenges my son was displaying were the tale-tell signs of the beginnings of autism. Most parents are aware there is a problem before 3 years of age, the typical age of diagnosis.

It is often difficult, not only in figuring out how to get a diagnosis, but also finding out what action to take. Many parents share a similar story of voicing their concerns to the pediatrician only to be reassured, “he’s fine, children develop at different rates.” If concerns are present, organizations such as First Signs will be able to help confirm ‘at risk’ behaviors. Read more

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One Dad’s Story about Autism

When our daughter was born, I was the most proud daddy in the world. As I am sure you have read in other stories about autism, she was doing very well until she turned about 18 months. That was when we noticed that she was losing words and when she stopped interacting with us. Knowing that the teen years were a LONG way off, my wife knew something was up long before I did. I was the one who believed the doctor when he said she is Read more

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Why is There So Much Hate Surrounding Autism?

By Dr. Nicole Sundene Since everyone is always asking me questions, I thought I would turn it around on my readers for a change. Can you please help me understand something that I am absolutely baffled by?!??!! Why is there SO Much Hate Around Autism? When I first thought about hosting “Autism Awareness Month” at the kitchen table, I truly felt honored to have the opportunity to do so. I truly felt if one little tiny thing that I might have to say or contribute in my research and quest to help parents understand their child a little Read more

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Should an Autistic Child be on a Gluten Free Diet?

For a success story involving autism and the GFCF diet, read Jake’s Story. By Dr. Selena Eon, ND The prevalence of autistic spectrum disorders appears to be increasing, either through increased incidence or through better diagnosis. Currently, there is no known cause, and no known cure. Without a known cure, desperate families are turning to a variety of potential treatments discovered through the internet, television and other parents. These new therapies may work, however, at this point in time there is no scientific evidence that ANY treatment works for autism. Without known treatments, families are left with a choice: to either do Read more

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Autism: A Case Example of Hope

Since it is “Autism Awareness Month” I have gathered together all my favorite autism experts to add their two cents to the topic. Dr. KC Kelly is a psychotherapist who has many years of experience in helping autistic children and their families. If you are a stressed parent of a child diagnosed on the autism spectrum, I would highly recommend writing in to Dr. KC for support, or seeking support somewhere, whether it be through a local or online support group. Over at www.DocintheBIZ.com you can write in for professional confidential, caring support anytime. ~Dr. Nicole “Autism: A Case Example of Hope” by KC Kelly, Ph.D Alex’s (name has been changed to protect anonymity) mother sat across from me and cried into her hands. “I just don’t know what to do anymore,” she began. “From the moment he gets home from school, he races through the door and right to the couch in the living room where he throws all the pillows onto the floor and begins to run back and Read more

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Autism: Lin and Sam Wessels’ Story

Samuel Fisher Wessels was born on January 19, 2002. He was literally an answer to prayer. Oh yes, I’d prayed long and hard for little Sam Wessels. I wanted so badly to have a child, and I wanted just as badly for my husband to have a son. Quite frankly, neither of us was getting any younger. After nearly two years of praying unremittingly, it happened. We were going to be granted our wish for a child! I then prayed for my child every single day, “Please Lord keep him safe….Please Lord protect him. Please Lord keep him well…Please Lord let everything be okay.” One day, on bended knee, I even went so far as to pray for the son that I knew the man I loved more than life wanted so badly! I continued to pray, “Please Lord….” When we learned our desire was about to be honored, I knew the name our son must have, Samuel. Ah yes, nothing else would do. Samuel from I Samuel 1:20, “…that she bare a son, and called him Samuel, saying, ‘Because I have asked him of the LORD.” I loved being pregnant, absolutely adored it! It was quite possibly one of the happiest times in my entire life. I loved having that life growing inside me. I loved the anticipation. I loved the responsibility of caring for someone more than I cared for myself. I loved that he was a part of me. When Samuel was born ten weeks premature, I was scarcely afraid. Oh yes, I was concerned and anxious, but I honestly felt comfortable that all would be well. I even joked at how badly I felt for little Samuel. “Poor kid he’s going to be just like his mother, has to do everything the hard way.” Little did I know…. We worked very hard for the next six weeks. The hospital had many milestones and stipulations which had to be met by both mother and father as well as baby, before baby Sam was allowed to accompany us home. I visited him every day without fail. We followed the rules to the “T”. All we wanted was for our beautiful little redheaded boy to come home, my little copper top. He weighed all of 3 lbs. 3 oz. when he made his hasty debut into this world, but he thrived! So much so, that his doctor told his hometown pediatrician he was doing “remarkably well” when he called to inquire. Having spent the past forty days and nights in the NICU, having met all the stipulations and required milestones, little Samuel Wessels was allowed to come home! He was so beautiful! Still is! It was February 28, 2002. We are fortunate here in Iowa, the state offers to assist parents of premature babies until the age of two, at which time they expect they will have caught up to their peers. As a result, Sam was afforded many state services. A nurse came to our home periodically; they tracked his development and kept us armed with any and all pertinent information on raising a healthy child. Sam continued to do well. He was developmentally delayed by exactly two months which was to be expected. We continued to work hard, especially little Samuel. As a matter of fact, he had done so well, he had been discharged from nearly all of his state services, all but one. I’ll never forget how disappointed the Sioux Valley Children’s Specialty Clinic doctor evaluating Samuel was when I seemed less than enthusiastic that Sam was being discharged from their care for having met their developmental criteria. It wasn’t that I wasn’t happy for Sam, I was. It was simply that I wasn’t surprised. Like I said, he had already been discharged from his other residual services, including his Early Intervention Educational program. His Health Families’ nurse agreed to continue only because I begged her to, and she too felt it was in Samuel’s best interest to have some professional support until he actually turned two. As the two year mark approached, it was becoming apparent that something was not quite right. He had lost the few words he had spoken, he became irritated and agitated; we didn’t know what he wanted or how to console him. He seemed indifferent. And there was something new….he flapped his hands, walked on his toes and paced almost nonstop! As we sat at the kitchen table one day, I inquired of his Healthy Families’ nurse when he began to flap his hands, “What do you think about that?” “I’m not sure,” she replied, “What do you think of it? Does he do it a lot? Is it something new? Is it something he maybe learned at day care and is mimicking?” I started, “I….I…I don’t know.” “It’s okay, you can tell me,” she continued, “I know you’re thinking something, what is it?” I took a deep breath, “I don’t know why but for some reason it makes me think of autism,” I confessed. And it was true; I had no idea why his hand flapping caused me to think that. I knew relatively nothing about autism. I had had minuscule exposure to the condition but that is what I thought of, nonetheless. She began to ask me more detailed questions, “Does he still have the same words he had when we visited last month? Has he added any new words? He has lost language? How many words does he have now? How long has it been since you heard him use them? Does he respond to his name? How is his sleeping? What else have you noticed? Would you mind going to Spencer for an MChat?” I began to realize, she was suspect of autism too. Sam was just twenty-two months old. Of course, we went to Spencer, to one of our state’s hospitals. We saw the same nurse practitioner who’d been following Sam since he’d come home to us. We did an eval and an MChat. I recall her telling me how he wasn’t closing the developmental gap. I recollect her commenting on how he had been closing the gap but that currently it was widening rather than continuing to close. I remember taking the defensive and asking her if they realistically expected them to catch up miraculously at two simply because they have now turned two, and asked how it was that he could have been doing so well that all of his previous services had discharged him only to find that a few months later he was falling behind. He wasn’t only falling, he was now spiraling downward! I remember the concern in her face and the compassion in her eyes. She was very gracious and understanding. Sam was now two years, ten days old. It seemed as though time had stopped. Everyone at work asked how Samuels’s appointment went; not knowing it was anything but routine. Of course they’d ask; he’d always done so well! I told them we were in a bit of shock, telling them, “They think Samuel may have autism.” Exactly one week later, Spencer called with the results. Barb, the nurse practitioner, called us herself. She told me that the results of the MChat came back as significant. “Significant? Significant for what?” I inquire, “Delays? Developmental delays?” There is an enormous pause; the silence was deafening! “No, for autism.” She wanted to know what we wanted to do next. My mind was spinning! “We are not qualified here to give that kind of diagnosis. You can come back in three months and we can evaluate him again, you can go to AEA (Area Education Agency) in Sioux Center and have him reevaluated in three months or we can send AEA to your home. Which do you prefer?” “I guess it would be best if they could come here,” I suggested. This is the first time that my husband and I really began to research autism. We turned to the Internet. Absolutely everything I read says that early intervention is the best chance for a better long-term outcome when it comes to autism. I began to wonder why we’ve been asked to wait an additional three months to repeat the same eval by someone still not qualified to give us a diagnosis. Either it is or it isn’t; I wanted to know! We were wasting precious time! So I got on my soapbox. I wanted a referral. We visited Sam’s pediatrician a few days later and he tells me that he has patients with autism. He’s seen autism in his practice and in his opinion, Samuel does not have autism. I asked him about his language. “Boys are often slower to talk. He’ll catch up,” is the response he offered. “What about that?” I asked. Sam was pacing around the exam room on his tip toes, flapping his hands. “So. So what? I’ve seen plenty of other kids do that. He’ll outgrow it. I wouldn’t be concerned.” Our doctor seemed so certain. “But he does it all the time,” I countered. “He doesn’t respond to his name. What about that? I know he can hear, he doesn’t respond to us.” “Samuel. Samuel. Samuel! He’s going to ignore me now,” he insisted. “He does that all the time, too.” I was weary by that point. “What about Barb in Spencer and Melissa from Healthy Families? Their tests show he is ‘significant’ for autism. Can’t we at least get a referral to someone who can evaluate him?” Now, I insisted and he agreee; however, a week later, we still had no referral. I called Melissa, who joined me on my soapbox! She concurred; either he has autism or he doesn’t and the sooner we can find out, the better. In the mean time, I called around and found out exactly who WAS qualified to give a diagnosis such as autism. There was one doctor and his assistant within a 150 mile radius, so I called her clinic. Her receptionist informed me that it will take four to six months for an appointment without a referral. I called her office directly and got the answering machine. Sobbing uncontrollably into the phone, I begged her to “Please help me help my son.” No one returned my call. Melissa did eventually get me a referral. She is a wonderful person to have in your corner! Because of a cancellation, we got an appointment for six weeks later. As the weeks passed, we continued to search for answers via the net. We convinced ourselves our son didn’t have autism. He was loving after all. He didn’t bang his head, scratch, bite, wasn’t aggressive at all. He was just different, that’s all, just different. When they called two weeks prior to appointment day to confirm, I told them we didn’t want to waste anybody’s time when another family could perhaps put that time to better use. Fortunately for Sam, the hospital’s social worker convinced me that it would be best to know for certain and that finding out one way or the other couldn’t possibly be a waste of anyone’s time. I’ll never forget that day. I try sometimes, but it is etched in my memory forever! It was March 25, 2004. Samuel Fisher Wessels was twenty-six months old. The room was filled with an entire team of evaluators, each doing their part of the evaluation. They kept both Sam and I very busy! There was a two way mirror in the room and we were told we would be observed as we underwent the process. The entire evaluation took about an hour and a half. The doctor couldn’t get over what an ordeal it was for me to get to this point, to an actual team qualified to evaluate my son. She couldn’t believe the process was so brutal. Then I confessed to being the mom who called and left the message on her answering machine. I couldn’t help but wonder if she remembers and wondered what she must think of me. The team of professionals left the room to discuss their results. They were gone about a half an hour, although it seemed like an eternity. When they returned, Ms. Mork informed me, “We have your diagnosis; it is autism.” I tried with every essence of my being to choke back the tears and maintain my composure. I managed to ask, “So now what?” “So now you need to go out and educate yourself on your son’s condition,” is what I was told. Something about at least one hour of speech three times a week, an OT and a PT eval to see what he qualifies for and blah….blah…blah…I was having a difficult time absorbing anything more. I stood there in disbelief. So now I need to go out and educate myself on son’s condition. Is she serious? That’s it? Are they serious? Sadly, they were. The first book I read was a loaner from our local Area Education Agency. It took me more than three months to read it. It was full of medical terminology I didn’t understand and many of the words had to be looked up on the computer as they were medical terms not in my dictionary. It was awful. I was very depressed because I felt like I didn’t know how to help my son. I felt him slipping further and further away and I didn’t know were he was going. It was a helpless feeling because I didn’t know what to do. It was a very painful time. I cried a lot! I was often angry at our situation and I barely slept. All I could think was, but what about Samuel? What will become of my precious Samuel? If I could change only one thing about autism today, it would be this: that it wouldn’t take parents so long to get the help their child needs and deserves; after pushing and prodding to get an eval only to be turned loose; alone, forlorn, terrified and bewildered, not knowing where to turn. I understand that in some areas this has gotten better, but in many areas of this vast nation, we’ve got a long way to go. I, of course, did come to realize that it was up to me to pull myself up, put myself back together, and help my son, because no one else was going to! He needed me and I was not about to fail him. Since then, we’ve been through the gamut of experiences, therapies and medications. We’ve found that melatonin is very effective for Sam for his sleeplessness. It has actually been a Godsend. We tried Metadate CD (time released Ritalin) when Sam was only four and a half. It had quite the opposite effect from what was intended. We nearly lost our little boy altogether! The sparkle in his eye was gone; he was no longer my incessantly chattering, clever and inquisitive little boy. He seemed as if to all but disappear. On two different occasions, when trying to accommodate his difficulties in school, he had been prescribed Prozac and Strattera respectively. He was five. I nearly came unglued! It irritated me that they so eagerly reach for psychotropic meds for our small children rather than commit to them the extra time and one on one attention they require to learn and function in the classroom. Does medication have its place? Of course, but it is not the quick-fix, cure-all they’d sometimes have us believe it is. We’ve had our educational and insurance battles as well. Sam’s mom’s a fighter, like Sam. I’ll not easily forget the time the President’s office called me concerning an Early Access educational dispute I’d written to him about. What made it especially interesting was the fact that the speech pathologist was here, in our home, when I received the call. She couldn’t help but notice as my jaw hit the floor. We had been battling the system to obtain more speech services for Sam at the time, as our insurance wouldn’t cover private speech sessions. We couldn’t afford $105 for 15 minute sessions with a half an hour minimum. I wrote to our Governor about that one. His office did conduct an inquiry but had no jurisdiction over the private sector. We’ve done Occupational Therapy, Physical Therapy, Speech and Discrete Trial. We’ve spent thousands of hours on the road going to and from each one. There have been many we would like to try but haven’t the funds, or they are simply not available to us in our area, which breaks my heart! You’d think you’d grow accustomed to hearing; “I’m sorry but I don’t know how to help your son, we can’t help your son, or we can help your son, but you can’t afford it.” But you don’t; you don’t ever grow a thick enough skin to accept that as satisfactory. So, I continue to write my elected officials and see them in person every chance I get. I’ve acquired an entire drawer full of responses from them. We’ve tried a variety of bio-meds. Many different biomedical approaches; some have actually had adverse effects, while others have had none at all. I’ve never felt comfortable enough in what I’m doing with the biomedical approach to do it for very long. Like so many other parents, I’ve grown weary of knowing Sam has a system which is unique from that of most of us. I know he has underlying medical issues and sensitivities. I’ve grown frustrated with mainstream medical doctors looking at me as though I have two heads when I try to discuss it with them. It disgusts me even more when they patronize me and tell me they will at least order the testing and the labs only to never hear from them again. It’s exhausting trying to educate each of them one by one; doctors, nurses, teachers, aides, principals, relatives, neighbors, clerks, etc….about autism. I wish there were an easier way. I wish we could educate the masses. I guess you could say there is A LOT I’d like to change about the realities of autism. It angers me that they’ve neglected to take autism seriously, to the point that is currently an epidemic! It infuriates me that so many of our children are now adults or nearing adulthood with nowhere to go and very little in the way of a support system. I am sickened to think of how their parents must feel. I am nearly consumed with grief when I think of how many parents have traveled this same journey before us, only to have their concerns fall on deaf ears, or worse… I try to turn my anger into productivity. I am very proactive when it comes to my son and autism. I was appalled to discover how little was known about autism, how little funding has been allocated to autism and that, at the time, one in 166 children had autism. One in 166 is now one in 150. I fight for Sam’s rights and the rights of all the others on a regular basis. Currently, Sam is in the first grade with a one on one aide, his “helper”, as he lovingly refers to her. With the extra help and attention he requires, that his autism requires, he is holding his own, keeping up with his peers and even learning to read. He is happy and well adjusted. He loves and he is loved, by many! That alone speaks volumes of his progress. In looking back, knowing what I know now, I can honestly say the only thing I’d do differently is the vaccines. Do I know conclusively that vaccines caused my son’s autism? No, I do not. Do I think it is a possibility? Absolutely, I do! A very real and distinct possibility. What I’d like to have is to have been given the opportunity to decide for myself which vaccines were necessary and which carried entirely too much risk. I’d like to have not been made to feel as though I had to choose between the flu shot and my job while I was carrying my son, after trying to refuse it not only once, but twice! I’d like to have been given a choice and a say in the matter. I’d like for the hospital to have felt as I do that an entire month before due date seems awfully early for babies’ first immunizations. I’d like to have at least been given the peace of mind in knowing that his autism was not caused by vaccines, because I would have opted to wait and see before allowing him to be vaccinated. Or even better, I’d like to have afforded my son NO autism because I refused to trust the status quo. I can’t say what the future holds for my little Sam Wessels. I do know that I am going to leave no stone unturned, I am not going to accept no for an answer when it comes to helping him or finding answers, and I AM going to keep fighting the good fight for him and all the others like him! Related reading: Autism Awareness Month Autism: 10 Strategies for Implementing Diet Changes The Autism Diet Connection Autism: 10 Tips for Everyone

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Autism: Happy 19th Birthday Jake!

By Tanya Dutton

I took my boys to the doctor because my youngest son was sick. After less than five minutes in the exam room, the doctor turned to me and said “Mom, it is your other son you need to be concerned with. I think he may have autism.”

That moment will be embedded in my brain forever. I had known in my heart that something was wrong with Jake after he had his vaccinations at around one year of age.

The milestones he had reached seemed to have been erased, and further development had come to a screeching halt. Prior doctors had brushed off my concerns and told me that every child develops at their own rate, and I was a young mother so what did I know anyway?

For the next 15 years, I read every book I could get my hands on, joined support groups, and prayed every day that God would show me the way to help Jake get better.

I suffered a tremendous amount of guilt, along with sleepless nights, days full of frustration, and emotional breakdowns. Read more

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Autism: Marin’s Personal Story

By Marin I was born healthy in NYC and at that time, nobody knew that there was anything different. However, when I was a toddler, I wasn’t walking or talking, nor did I hit any of the usual developmental milestones. I don’t remember any of this obviously, but my mom tells me. She kept taking me to different doctors (a speech therapist, a neurologist, a physical therapist, etc.) to try getting answers and they all told her that I’d most likely never learn to do anything and wouldn’t be able Read more

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Autism Treatment Center of America: The Son-Rise Program

Autism Treatment Center of America: The Son-Rise Program By Tara McClintick Parents and others who care for and work with children with special needs will find The Autism Treatment Center of America to be a breath of fresh air. Located in Sheffield, Massachusetts at The Option Institute, the program is designed to support and inspire adults as well as the children. The staff receives extensive one-on-one, observed (through a one-way mirror), training with children having a variety of challenges. Parents and others who attend their programs are also trained in the basic principles as outlined in the book Son-Rise. The program originated in 1974 from Bears and Samahria Kaufman’s successful efforts to reach out to their son Raun (now the CEO of the organization). In this video of various staff members working with children using the Son-Rise method, notice that the program is flexible to meet the individual needs of the child. The child’s inner motivations are used as bridges for connections and opportunities to encourage the next developmental steps. Some Key Features Include: *Joining the child in exclusive behaviors to learn about him/her and building Read more

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Autism and Jenny McCarthy

By Dr. Nicole Sundene I was just reading this article by Jim Carey on vaccines and started thinking…. Wouldn’t you love to be a fly on the wall at Jim Carey and Jenny McCarthy’s house? I have always been a fan of both of theirs and am delighted to see that they found each other. Nothing makes me happier than seeing a celebrity take on a cause that is personal to them. Jenny McCarthy’s son has autism and she wrote a book about it. As a physician, I appreciate celebrities personalizing these causes because I can only imagine how frustrating Read more

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Autism: Tara’s Story “My Introduction to Autism”

By Tara McClintick I’ve always LOVED kids. Unlike most of my friends who weren’t sure what route they wanted to take in life, I was confident in my choice to become an Early Childhood Teacher. My first post-college position was to teach a preschool class for the County MR/DD program. It was here I was introduced to the diagnosis of “autism.” No one told me about it, I found a list of the symptoms while searching for answers. Most of the kids in my classroom played Read more

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Son-Rise Book Review

By Tara McClintick Son-Rise is the true story of Raun Kaufman who, as a child, displayed all the symptoms of and was diagnosed with severe autism. “Bears” and Samahria Kaufman had two daughters prior to the birth of Raun, and had been learning how to explore their beliefs to become happier people. The Option Process is the gentle self-exploration tool they used to uncover the beliefs fueling their discomforts and fears. As Raun approached his first birthday, he appeared to be profoundly autistic in every way. He was unresponsive, would go limp when Read more

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Autism: A Brain Under Attack

By Dr. Scott Olson While the number of children with autism continues to climb, the reason for this devastating disease has remained a mystery. A central mechanism (or a theory that explains the entire disease) has been elusive, but Russell Blaylock MD, author of Excitotoxins, has recently authored scientific articles that support the notion that autism may be the result of chronic microglial activation. What exactly is chronic microglial activation? Let’s take a look. What is in Your Head? If you were to ask someone what their brains are made out of, Read more

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Autism: Gretchen Wilson & Sean Ashley’s Story

By Gretchen Wilson When my grandson was four years old, we went through a very difficult time.  He is both autistic and blind, and I really thought placement in a foster home would help me to care for him and keep him safe while I dealt with a few situations. Unfortunately I was wrong. In foster care, he was neglected. He looked like a starving war orphan with a distended belly – he was chubby before. So I took pictures, went to the judge, and he had Sean at the courthouse within two hours and I was able to take him home. The attorney advised me to put Sean in a state institution, stating that I was young and needed a life of my own. Sean’s case worker said that she was placing him in a state institution because he was a vegetable, that he did not talk, and threw fits. I told her “over my dead body”. When Sean was small, he had tactile issues and ate mostly bread type foods. He now eats almost everything. He loves milk a lot, but would never drink water. I started mixing whole milk with water, just to get some water into him. Once, I accidentally bought 2% milk and he would not touch it, even with no water in it. He would make an angry sound and shove it away. To help him with his memory skills, I would sing songs and then leave a blank for Sean to fill in. He knew every word I left blank!!! I also used a drum beat to modulate his language. I would put his hand over my mouth so that he could feel how I said the words. In fact, he still loves to do that, even at 29 years old, especially when we are in the car. Sean has enough language now to let one know just about everything he wants and has a great memory. His mobility skills are great; it’s like he has a sensory antenna in his head. I founded The Sean Ashley House in 1994 so that I could be assured that he would always have a happy, loving and safe environment, even when I could no longer care for him. He now thinks his last name is House. If someone says “Sean Ashley”, he adds the “House”. When I founded the House, I made sure to offer the services that autistic children need. He now loves swimming, music, horse riding therapy, dancing, using the treadmill… and I could go on. He loves to go up and down my stairs, and the minute he gets into my car, he doesn’t stop saying “hamburger” until we finally stop to get one. Now when I bring him home for weekends, after about 24 hours, he starts saying “Sean Ashley House.” This makes me feel so very good that he loves his home. I’m at peace now when I think about what will happen to him when I can’t take care of him any longer. Everyone, even the court system and social workers, needs to be educated on autism!!!! Related reading: Autism Awareness Month Autism: 10 Strategies for Implementing Diet Changes The Autism Diet Connection Autism: 10 Tips for Everyone Autism: A Brain Under Attack Read more stories in the Autism Category

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Autism: Debi’s Story

By Debi Tyree Haney I had a normal pregnancy with my second daughter, the only exception being that I was diagnosed with gestational diabetes at week 34 of pregnancy. In July of 1999 I gave birth to a 7lb, 13oz baby girl named Allie. For the entire 9 months following her birth, she cooed, babbled, reached out, and made all her major developmental milestones within appropriate time frames. At 9 months old she contracted chicken pox. Two weeks after the onset of her illness, while still scabbed over, she was given a hepatitis B vaccine. Within two Read more

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Autism: Seth’s Story

My name is Kelly, and I am the very proud mom of a beautiful little boy named Seth. He is seven years old and has Autism. Back when I was pregnant with Seth, I never knew that Autism was becoming the most rapidly growing epidemic of our time. Back then, I’m sure it was still around 1 out of 500 or so. Did I ever think that I would be here today, fighting this battle? No, in fact, the only time I had ever heard of autism was when I saw a primetime movie about a young child with autism back in the 80’s. I never in my wildest dreams thought that I would be living out that movie myself. Never did I think I would be in the forefront, fighting for my son. Firstly, I had a normal pregnancy! I was a single mom, but Seth’s dad and I made the decision to live together and raise Seth, even though we didn’t have a relationship anymore. It was a good decision. Seth was no ordinary baby and he loved to be loved. I would sing to him or play music to him while giving him a bath. He loved to be held, he smiled, laughed, had the most beautiful blue eyes. We were so proud of him when he began walking on his own at 10 months old, speaking his first words, and reaching his milestones much earlier than normal. Being good parents, we kept up with his physicals and vaccines. Around 18 months, things started to change. I really noticed big changes around age 2. He spoke, but made no sense; he had bowel issues, he flapped his hands, made us read the same book over and over, ran in circles. He would get up every morning, take the register off of the heating/air duct in the kitchen, stand INSIDE it, and proceed to take out everything and line it all up. What’s more, he was sick constantly with fevers that seemed to come out of the blue. He developed pneumonia, his ears would drain, and he cried more than usual. Still, I had no idea this raging epidemic that was going on all around us had its latest victim right in front of my face. No clue that it could have been related to his last vaccination. We moved to a larger house. My oldest son finally got his own room, and Seth got a yard! I thought it would be great! It gave Seth all the room he wanted. He became obsessed with trains. He still talked, but still didn’t make a lot of sense. He just wasn’t where he should be at three years old. It bothered me but his dad would say “oh, he’s just odd, he’ll grow out of it.” I actually remembered that TV movie from 25 years prior, and thought to myself, “Could my son ALSO have autism?” I didn’t want to think about it. When Seth was 3 1/2, his dad and I parted ways and I worried about the impact it would have on Seth, but he adjusted quite well. Not long after that, I met a wonderful man. From day one he was on the bandwagon with me. The first time he met Seth, he immediately knew something was amiss; did he have a delay? I said “No, but I think he may have Autism.” He BELIEVED me and encouraged me to have Seth checked. I actually had someone on my side. When Seth was four, this boy who never said “I love you” walked up to me, put his arms around me and said, “Mommy, I love you.” I looked at Alan, tears in my eyes. This was the first time that my son had said this to me and I’ll never forget it. Alan looked at me and said “That was huge, and you KNOW he meant it.” Still, even with all of the signs, I didn’t have him checked. I should have taken that boy the next day, and the bottom line is that I didn’t. Denial still had its hold on me. Fast forward a year to kindergarten. Seth had an EXTREMELY rough time adjusting to a new schedule. He cried every morning when I left him. His teacher would send notes home about the troubles he was having. What was I going to do? I knew what was wrong, but didn’t want to admit it to myself. My answer came during parent-teacher conferences about a month after school started. We talked about Seth, I mean really talked. Then there came a point where I looked into her eyes and she didn’t have to say a thing, her silence said it all. Neither one of us could say the A word, but when I told her that I was going to take him to have him evaluated, she said to me in a very soft voice, “I think that’s a good idea.” I left that room with tears in my eyes for my child. At his next physical, Seth was sick (once again.) When he had a fever, oddly, he was more coherent – almost normal. So during this visit, when I told his doctor that I thought Seth had Autism and I would like a referral, he looked at me like I was from Mars. He said: “Well, he’s acting fine NOW. Why do you think there’s something wrong with him?” I said “I didn’t say I thought there was something WRONG with him. I said that I think he may have Autism. He’s sick today! See him when he’s NOT sick!” He took my word for it, and referred us to a child psychologist. This man was absolutely fantastic. He saw us within a week, observed Seth and worked with him. After five days of waiting, he told me what I knew in my heart all along. Seth had Autism. Funny thing is, he never said “I’m sorry, but…” I like to describe his diagnosis like this: “Here is your son. I’m giving him an Autism Badge, NOT a label. Yes, he will always have it; however, great things lie in store not just for him but for YOU as well, depending on what you do. Now, here’s a sword, a shield, and a suit of armor, you go out of this office a Warrior Mother, go fight the monster and get your son! You make him the best thing he can be!” ME? I know nothing, and I’m no fighter! Soon, Google became my best friend. I read a ton of books, joined a support group, and made a few friends. I learned to work WITH Seth, not against him, and learned to give him the strength he needs to just be Seth. Since that day, Seth has blossomed. He still exhibits some signs of Autism, but for the most part he is so much better than he was last year at this time. My fears have been put to rest. This monster isn’t so scary, because a mother’s love for her child is the most powerful force in the universe. Autism may have won a couple of battles, but this mom has won the war. Related reading: Autism Awareness Month Autism: 10 Strategies for Implementing Diet Changes The Autism Diet Connection Autism: 10 Tips for Everyone

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Autism Awareness Month

By Trécera Lee

April is Autism Awareness Month.

Sad that we have to have special “days” in order for the world to recognize that autism is EVERYWHERE!

Today, I’m asking, “What do YOU want the world to know about autism?”

What information are you willing to share in the hope that others may learn from you?

It can be:

• How do you feel about autism?

• How do you feel your child is affected?

• How is your family/life affected?

• Struggles of autism?

• Joys of autism?

• ANYTHING

Here’s what I want the world to know: Read more

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Autism: 10 Strategies for Implementing Diet Changes

By Tara McClintick Why are food and diet some of the most challenging aspects of raising a child with autism? Make the decision to change the way your child, and perhaps your whole family, is eating and – BAM!!! You seem to hit walls of resistance every which way you turn! The walls are so thick that you may even wonder, is this even possible? Is it worth it? If you have answered “no” to those questions before, you are not alone. I have too. Then I realized that if I ever wanted things to change in the outside world, my inside world must Read more

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