Editor’s Notes…
●You are in for a real treat in this newsletter. Three moms share their stories and the wonderful advances their child has made through different treatment and therapy approaches.
If you would like to share your story in a future newsletter, please do contact me. ● Read about our own Daniel Hawthorne, a contributor to the new book Autism 101, as featured in the Ruston Daily Leader.
Free Sign Language Classes to Improve Communication for Children with Autism
Our chapter has made arrangements for George B. Alexander, to offer free sign language classes! These classes are designed for children with autism and the significant people in their lives such as family members, persons who work with these children, and anyone who wants to learn Sign Language on a very basic level. The Sign Language classes will be held at Families Helping Families (where we hold our monthly support meetings) and will be very informal. The first class was in lieu of our July monthly meeting. Dates and times for subsequent classes were determined at that time. Classes will continue until there is no further interest. If possible, please, notify FHF (361-0487) if you wish to attend and to determine the date/time of future classes. Anyone can come, if they notify the FHF center or not, but it would be helpful to know how many plan to attend. We greatly appreciate Mr. Alexander’s generous offer to provide these classes. You may request specific words/concepts that you need to be taught to help communicate with the child(ren) with autism. Please, think of signs you need to know and if possible bring pictures – cut from magazines or photos!
Songbird - Jake’s Story
By Connie Moreland dcmoreland@bellsouth.net
Last Sunday I watched my son Jake and his brother Zach from across the table at one of our favorite restaurants. My husband and our other child, Jonathan and I had decided to go to lunch with my best friend, Traci and her sons Skyler and Hayden. Hayden is a five month old baby with a beautiful, shiny, bald head. Jake walked over to Traci, who was holding Hayden, and began to rub Hayden’s head. Jake smiled at Hayden and put his arms around the baby’s waist. He looked at Traci and said, “Oh, Miss Traci, Hayden is so sweet! He’s so tiny and his head feels like a big peach! It’s so smooth and soft.” Traci and I laughed so hard. My husband and I exchanged a look of complete pride in our sweet son. Just four years ago, Jake was diagnosed with infantile Autism.
Jake was born on October 10, 1999. He was our first child. I was a young mother in good health. I had an uneventful pregnancy with the exception of a lot of unwanted pounds! My beautiful boy had dark hair with amazing blue eyes. He was round and pink. His nose was the size of a button.
Our first sign of trouble came three weeks after he was born. Jake developed a horrible case of colic. He screamed from 11:00 at night until 4:00 in the morning. As a new mother, I was horrified by what was happening to him. He was listless and didn’t seem to be comforted by anything. Many trips to his pediatrician yielded the same response. He was just a colicky baby. There was nothing else they could do for him.
His colic gradually subsided and he continued to thrive physically. He gained weight and had excellent head control. But my instincts told me something wasn’t completely right. He was meeting all of his physical milestones, but he looked almost vacant. He didn’t coo, smile, gurgle or reach for any toys. By the time he was five months old, I began to panic. My girlfriend had a baby girl almost the same age, and I was constantly comparing her bubbly, wide smile with my son’s somber expression. Several people told me, “Oh, that’s just the way boys are. They’re not social like girls are.” Letting myself believe he was a late bloomer or “just a boy” I let go of my nagging suspicions for a while.
Jake’s first year and a half went by. We were in and out of the emergency room with unexplained high fevers, chronic bowel problems, and ear infections. During this time, Jake had developed a habit of flapping his hands. He also put his hands over his ears at the oddest times. He screamed or grunted to communicate. He hadn’t been able to form any words yet. It was a system of trial and error to figure out what he needed. Was he cold or hot? Hungry? Tired? Was he in pain? Angry? Happy? I had no way of knowing.
In the midst of the chaos, I gave birth to our second child, Zach. I hadn’t planned on becoming pregnant so soon and I was overwhelmed with fear. How would my family stay afloat? Zach turned out to be the beacon in our sea of despair. He would provide much needed stability in our lives and renew my faith that God knew exactly what we needed.
We took Jake to Key Rehab, Inc. shortly after his second birthday. Looking back, he was so tiny and frightened. He slept right through the initial consultation with the head Speech Pathologist, Maria. Maria would become the first of many who would cast out their love, patience and hard work to buoy our struggling family. Key Rehab immediately began providing speech and occupational therapy for him. Even though he hadn’t received a diagnosis yet, they began to use some A.B.A. techniques and began using the P.E.C.S. method of communication. I’ll never forget the first time he brought me a picture of a Goldfish cracker and patted it with his chubby hand. I cried over a cracker! The entire staff had been trained in both approaches, and, boy, they were incredible! Jake had to learn EVERYTHING from the ground up. He couldn’t clap, hold a spoon, or imitate any behaviors or vocal noises. He screamed when you touched him. He bit his therapists, me, his Dad and his brothers. To say it was heartbreaking is an understatement.
Two months into his therapy we took Jake to see a child psychologist named Dr. Edward Scholwinski. He had been recommended by a close family friend. Dr. Scholwinski would become a trusted confidant and a comfort to us in the years to come. He initially diagnosed Jake with PDD-NOS. A week later we took Jake for a neurological exam. His first Pediatric Neurologist diagnosed him with infantile Autism. She and Dr. Scholwinski both recommended the A.B.A. approach. We found a behavioral psychologist close to home, and began writing Jake’s “program” immediately.
We weaned him from the P.E.C.S. quickly and focused on verbal communication. He was rewarded for the smallest sound. He caught on quickly. Soon he was saying, “bubbas” for bubbles and “cacka” for cracker. We worked with him everyday. My husband and I hired some women from our local church for training. They came to a weekend seminar with Jake’s behavioral psychologist, Dr. Mark Wildmon. These women worked tirelessly on Jake’s behalf. One woman, Kay McNeil, would stay with Jake for two years. I’m convinced I would be one burned out lady had it not been for Kaye.
The next two years would be a whirlwind of ups and downs, a wonderful set of new doctors to provide extended training and biomedical advice, and the biggest blessing of all. Jake had been granted access to a preschool setting with his typically developing peers. This is what he needed. He had come so far with his therapy, but he needed a chance to practice in the outside world. Special education was not the right place for him. He attended First Presbyterian Playschool five mornings a week and continued his speech and occupational therapy in the afternoon. His A.B.A. protocols took place after lunchtime. He finished the Playschool in the fall of 2004 and we enrolled him in Trinity Episcopal Day School as a Pre-K student. He attended school with his buddy, Miss Kaye and left only for speech and occupational services at Key Rehab. He not only excelled academically, but he exploded verbally. His teacher, Mrs. Butts was a godsend. She understood Jake and gave him room to grow and make mistakes. She treated him like every other child and expected the same things from him. We let Kaye go that November because we felt it was time for “baby bird to fly the nest”. We needed to know he could do this on his own. We were a little fearful in that he’d been monitored on some level for so long. Our fears were unfounded. He passed Pre-K with flying colors and even received Citizen of the Month along the way!
The real test would take place in August of 2005. We would leave the safety net of private schools and private therapy facilities and begin a public school close to home. Those of us who have been through the public schools know what a tangled mess it can be when you’re trying to place your special needs child. In order to prove that Jake didn’t need special education services, we took him back to see Dr. Scholwinski. On July 14, 2005, Jake had a long visit with Dr. Scholwinski. There was an interview and testing. Dr. Scholwinski called us into his office and said, “I think it’s safe to say, Jake doesn’t meet the criteria for a diagnosis of Autism anymore.” He also said that Jake would always display some personality quirks and probably some difficulty with eye contact in new situations. But he was healthy, smart and on his way to Kindergarten with his peers. He definitely wouldn’t need to be in Special Education.
We enrolled Jake in Kindergarten in the fall of 2005. We met with his new Principal, Ms. Neeva Sibley. She was the epitome of what education should be. She believed in every child at her school. She believed every child was unique, and she would do everything in her power to ensure their success. Jake would have an IEP, but only to receive Speech therapy two days a week. His teacher, Ms. Donna, would report throughout the year that he was an excellent student and very sweet to his friends. I’m so glad that Jake’s first year at a new school would prove to be such positive experience thanks to his teacher, his Principal and the people that surrounded him on a daily basis.
He began his second year of children’s choir, too. He has performed in three musicals to date. He has had three different solos and numerous speaking parts. He loves to sing! His choir master, Becky Jones, has told me on several occasions that she’s so blessed to witness something as miraculous as Jake. She says that she’s feels honored to know him. She gave us a wonderful gift, too. She took Jake under wing when she invited him to join the choir. He was still going through intensive therapy when she invited him. This past year Zach joined his big brother in choir. It has been pure joy to watch my little men sing together.
Jake graduated from Kindergarten last month. He received a medal for the Highest Achievement in Reading. He was one of four in a class of forty children to receive this wonderful honor. As I watched one of his teachers put the medal around his neck, my heart fluttered. My eyes welled. “My darling boy”, I thought, “you’ve done it.” He has worked ten times harder than anyone. He fought to be heard and to reach out to us.
A lot of people ask me what worked for Jake the most. The answer is everything. There is the emotional aspect and the scientific aspect of treating Autism. My parents were Jake’s biggest fans. They worked quietly behind the scenes. They took care of our children when my husband and I needed a break. My mother accompanied me on countless trips across the country to lend her support at Jake’s appointments. They helped us financially and emotionally. His teachers, aides and his therapists lent their expertise and their hearts to us. They answered our questions and quelled our fears. I’m still a staunch supporter of A.B.A. It was the technique that worked for my child. It was the method that clicked with him.
We also utilized the biomedical approach later in his treatment. Jake has been on a vitamin regiment and has been on special diets. His Neurologist, Dr. Jean-Ronel Corbier provided wonderful tools with his dietary suggestions and his spiritual approach. I feel that the biomedical approach works very well too. It gave Jake a healthier immune system and better focus.
Our days are now filled with Coach Pitch baseball, T-ball, swimming lessons, sibling squabbles, and the constant barrage of, “I’m telling Mom!” Just the typical stress of everyday life! After the day is over and the boys are tucked in, I often reflect on the simplest gesture Jake made that day. Whether it’s a spontaneous hug and an “I love you so much”, or he holds his brother close to him when Zach has fallen down and scraped his knee, it never ceases to squeeze my heart. We have been through so much as a family and as individuals. None of us have come out on the other side without a battle wound of some sort. We would do it again tomorrow.
“For you there will be no crying. For you the sun will be shining. ‘Cause I feel that when I’m with you…it’s alright. I know it’s right and the songbirds keep singing like they know the score. And I love you, I love you, I love you like never before.”
“Songbird” - Christine McVie - Fleetwood Mac
Jake just graduated from Kindergarten with a medal for highest acheivement in reading!
NOTE: Connie Moreland is a Louisiana representative of Unlocking Autism’s Parent 2 Parent Network - parents and professionals who assist parents of newly diagnosed children in finding resources and support in their immediate area. Below are a list of resources that she found helpful. She will gladly share the name of Doctors and Therapists.
Websites:
Department of Education Websites
Download IEP Handbooks, Regulations and Bulletins
The UA Parent 2 Parent Network
Unlocking Autism has developed a national and international network of parents and professionals to assist the parents of newly diagnosed children in finding available resources and support in their immediate area, thereby reducing wasted time and research, and directing parents straight to sources of help.
Nicholas’ Story
By Danielle Hays mdhays2001@yahoo.com
Nicholas Alexander Hoffman was born a healthy 7 lbs. 7.5 oz. boy with average Apgar scores. There was no reason to suspect there might be any problem. He grew like a weed and his height was often off of the growth charts because he was just so long. He met all of his early developmental milestones. I had no reason to suspect there might be a problem, until Dr. Fichter, during a routine check-up, suggested that Nick was hyperactive. He was one year old. As a psychology student attending the local University, I knew all about the common North American practice of over-prescribing ADHD medications. I vowed never to drug my son.
Although Nick was meeting all of his developmental milestones on time, he did have problems with his health and some quirky behaviors that I questioned. Had I known anything at all about sensory integration dysfunction, I would have recognized these "quirky behaviors" as foreshadowing of the diagnosis looming in our future. Illnesses we battled were many, some more notable than others. Nick had chronic ear infections until his fourth birthday and seemed to never stop taking antibiotics. As an infant, he was hospitalized with RSV and pneumonitis simultaneously. Nick had gastroenteritis (stomach virus), with vomiting, every few months. He once had gastroenteritis six times in a six month period. I also rushed him to the hospital twice with a temperature of one hundred five degrees. In addition to everything else, he had had diarrhea every day of his life. It was clear to me, but to none of the doctors who treated Nick, that he had some sort of immune response problem.
In addition to the fact that my son was rarely well, I knew the unusual behaviors he displayed must have some meaning. From the time Nick learned to crawl, he would crawl with his face brushing against the carpet, a behavior I had never witnessed. Loud noises terrified Nick and he had the most exaggerated startle reflex I had ever seen. When he began walking at fourteen months, he only walked on his toes and this continued for about two years. Nick's ears were always red and he always had purple circles under his eyes. I have recently learned that the red ears and purple circles indicate candidiasis and food allergies. I mentioned all of these eccentricities to every doctor who saw Nick, and none of them thought any of these things indicated any sort of problem.
Nick spoke his first word in a timely manner but failed to progress. At four years old, he still could not form a sentence and there was a very noticeable speech delay. Nick was also not developing age appropriate self-help skills. Again, the doctors assured me that all was well and all children are different. I knew they were wrong.
Like the dismissive doctors, my friends and family believed nothing was
really wrong with Nick. They were all convinced that if I put Nick in
daycare, the structured environment would serve to reduce his hyperactivity.
They also believed that he would catch up where he was behind, just by being
around other children. So I put him in daycare. At the end of the second
month, I was called into the daycare's office. They told me that my son was
"special" and he needed more than they had to offer. So they kicked him out
and referred us to Pupil Appraisal. Pupil Appraisal's evaluation stated that
Nick had a developmental delay with autistic and obsessive compulsive traits
and ADHD.
I had read that food allergies play a role in autistic and ADHD behaviors
so I made and appointment for allergy testing at LSUHSC in Shreveport. They
tested him for IgE allergies and said he had no allergies. They also gave
him a pneumovac. Because I had not yet learned about thimerosal, I had no
idea that I was allowing further harm to my little boy. The doctors told me
that the pneumovac resulted in a correct immune response and therefore, Nick
had no problem with his immune system, even though he was ALWAYS sick. One
of the attending physicians pulled me aside when we were on our way out and
confided that if I didn't put my son on medication he was never going to
learn in school. I left the hospital, still unconvinced that Nick had no
food allergies but leaning toward the possibility of medication.
A year and a half later, Nick was diagnosed with autism. He also had an
abnormal EEG and was put on anti-seizure medication. This meant that Nick
was now on four medications. This is not what I wanted but I did not know
what else to do.
Armed with the knowledge that autism was the correct diagnosis, I called the
local Autism Society chapter and was referred to Lynda Huggins. When I
called her, she told me about thimerosal and vaccines and the possibility
that they were culpable for my son's autism. I could not believe what I was
hearing. She sent me an information packet and I began to research what I
had just been told. I learned about chelation therapy and the appropriate
food allergy test among other things. I found Dr. Cave and knew I needed for
her to treat Nick but I also knew that I could not afford her. Dr. El Dahr
was also treating autistic children at Tulane and accepting Medicaid
patients. I put Nick on her waiting list, hoping she could help us with
Medicaid footing the bill. Nick was five and as he got older and his
seizures worsened, we couldn't get help anywhere. I was even told by a local
pediatric neurologist that I wasn't doing anything appropriate to help my
son and because of this there was no hope of his ever getting any better.
For two and a half years, I had to live with knowing what my son needed to
get well, yet I could not attain it for financial reasons.
Three days after Nick's eighth birthday, I was finally able to take him to
Dr. Cave for an appointment. Among other things, she tested him for IgG food
allergies. Tests revealed leaky gut syndrome, heavy metal toxicity, chronic
candidiasis, abnormally shaped and clustered red blood cells and mineral
deficiency. The IgG allergy test conveyed nineteen food allergies! Dr. Cave
prescribed anti-fungal medication, MB12 injections, several supplements and
chelation therapy. Of course, Nick was not to eat any of the foods to which
he was allergic. She also recommended weekly Epsom salt and baking soda
baths.
About a week following implementation of MB12 injections, supplements and
anti-fungal medications, Nick's speech delay was almost nonexistent. He was
also less aggressive and more attentive. I am not one to care about eye
contact because I have a problem with it myself, but Nick was actually
making a little eye contact for the first time since infancy. Three weeks
after getting rid of all foods Nick was allergic to and only giving him what
he could eat, he was like a "normal" child. The red ears and purple circles
went away with the behaviors. By this time, Nick was no longer on
medication. All of the sudden, this child, who had never been able to sit
still and learn anything, even with medication, was taking spelling
tests........and passing! The child I could not take to the grocery store
because sensory overload would cause a meltdown where he would throw himself
on the floor and tantrum, could now go shopping with me with no problem
what-so-ever. It was a miracle! My son who had always called me "Aunt
Danielle" instead of "Mom" was calling me "Mom" for the first time. He was
also hugging me and telling me he loved me for the first time ever. Most of
his sensory dysfunction was gone as well. He has not been ill even once and
has not had diarrhea again since beginning biomedical treatment with Dr.
Cave.
When we were on vacation in AZ, someone who didn't know about Nick's food
allergies gave him a bowl of cereal with milk. Every bit of autism that had
been missing for the last few months came back with a vengeance. Eventually
Nick's behavior improved but it never was the exceptionally wonderful
behavior I saw before the cereal and milk incident. I later found out that
the teacher and her aid were sneaking candy to him at school because they
"felt sorry for him". When I could not get them to stop, I just put him on
enzyme pills and let him have the food he was allergic to because I simply
did not know what else to do. The enzyme pills were much better than just
giving the "bad foods" to him but his behavior was nowhere near what it had
been when he didn't eat the foods at all. I have recently begun to feed Nick
only safe foods again. When he eats a "taboo" food, I know within ten
minutes of the infraction when his ears turn red.
Throughout the last three years, Nick has made dramatic improvements in all
areas. When there are behavioral problems, I look for the red ears and
purple circles that indicate a yeast problem or a food problem. After
another round of anti-fungal medication and allergy diet vigilance, the
negative behaviors always decrease.
Dr. Cave has been chelating Nick for two and a half years now. What I have
learned about chelating an older child is that it takes longer than the
typical six months to two years it takes to chelate a child who is younger
than eight years. Other metals have to come out before lead and mercury will
be excreted. Nick began to excrete lead and mercury in large amounts five or
six months ago and I am hoping that we will be finished with chelation by
December but there is no way to know for certain.
I am often asked where I think he acquired so much metal and why he might
have a chronic viral load. I don't believe there is any way to know where
every exposure originated but I do know where he picked up some of it. I
received an MMR when I was eighteen so that I could register for college.
Nick was conceived when I was twenty. While I was pregnant, I received three
amalgams (mercury fillings). Then there were all of the vaccines Nick
received in the mid- 1990's when childhood vaccines were loaded with toxic
amounts of thimerosal. Dr. Cave has recently informed me that some of his
lead could have been passed from my mother to me and then to my son. My
mother was diagnosed with lead poisoning when she was eighteen months old
and of course it was not properly chelated out of her. Another source of
lead that could have passed from me to my son was my exposure throughout my
childhood. My dad made bullets for his muzzle loader (gun) by cooking them
in the pots and pans in which my mother prepared our breakfast, lunch and
dinner. He continued with this hobby for most of my childhood. These bullets
were made of lead, possibly 100% lead. Other sources might be too numerous
to count.
I am very thankful that we were able to seek Dr. Cave's assistance. Even
though several of the biomedical interventions she has Nick undergo are
covered by Medicaid and insurance, I never would have known what these were
without Dr. Cave's assistance. What she has done for my son has worked when
everything every other doctor put him through has only hurt him. Nick is no
longer sick and he has been seizure-free since beginning Dr. Cave's
protocol. Nick's behavior problems are few and I have no trouble taking him
places now. Before Dr. Cave, I could not even listen to the radio in the car
because it hurt Nick's ears but now he couldn't care less. The positive
outcomes from Dr. Cave's biomedical interventions have been outstanding and
I would cringe at the thought of what our life would be like if we hadn't
taken this road to recovery.
My favorite picture of Nick This is less than a year, maybe 6 months, after we began chelating, supplements, etc.
Joshua’s Story
Josh and daddy playing at Jordan’s baseball game last month.
House Warming Party!
Scott Cook’s parents, Barbara & Marty, are currently renovating a house to provide their son an opportunity to live independently. Scott , now 35???, is deaf and autistic. He is the first of our adults to have the opportunity to experience Supported Independent Living. Members of the Cook family’s church are helping with the renovations. Our chapter would like to help by hosting a House Warming party for Scott to help furnish his new home! We will let you know when a date is set. Child care will be provided and lots of refreshments served! Scott needs all the basics (call me for suggestions) – dishes, glasses, pots & pans, linens, small appliances and of course furniture. If you would like, you may contribute money toward larger items (microwave, furniture, lamps, etc.) to me (Lynda Huggins, 24 Karen Lane, Monroe, LA 71203) and I will see that your gift is acknowledged with the item. Hope you will join us and help Scott celebrate a new beginning in his life!.
New Program Director of Einstein Academy
My name is Holly York. I am the new program director for the Einstein
Academy. I have 13 years experience working with children with autism. I
have conducted workshops all over the state of Louisiana teaching others
how to work with children with autism. I was trained by Dr. Carbone on
Verbal Behavior and attended the hands on workshops 2-4 for Verbal
Behavior in Austin Texas. I have implemented Verbal Behavior in the
classroom for 3 years, utilized the TEACCH program for 12 years and have
just received National Board Teaching Certification in significant
disabilities. I have developed 8 autistic programs across the state in
various public schools and schools in the special school district.
My goal as the program director of the Einstein Academy is to provide
leadership, hands on training, organization, and enthusiasm so that the
center will continue to be a successful learning environment for
children with Autism Spectrum Disorder. With my leadership I am
confident that the Einstein Academy will be able to provide effective
programs and therapeutic services so that your child with ASD will
progress to new heights and gain more skills in the areas of
communication, socialization, academics, and functional life skills.
We are working on medicare and medicaid paying for services as well as
several private insurances. Also we are checking with local finance
agencies to be able to loan the money to families for monthy payments to
be rendered. We are working on the summer program cost and agenda and
revamping the cost of the regular school program.
Call the Einstein Academy if we can serve you. 318-323-1223.
http://www.theeinsteinacademy.com/
Crack open the world of autism
Judith Roberts, judith@rustonleader.com
07-05-2006
Ruston resident Daniel Hawthorne did not learn to speak until he was 6 years of age. Shortly thereafter, a physician declared him retarded.
After an IQ test revealed his verbal abilities were around 150 and he graduated from University of Arkansas with honors, Hawthorne began to have doubts about the “retarded” diagnosis.
As he came
across literature on autism and researched the subject,
Hawthorne
realized with amazement “This sounds just like me!”
Since this
time, the Arkansas native has served as a speaker about autism at school
assemblies and for therapist in-training sessions and written multiple pages
describing autism.
His first
book, Child of the Forest, is an autobiography and Guidelines to
Intervention in Autism is geared toward helping therapists better understand
the condition.
In his
latest and possibly biggest accomplishment, Hawthorne acted as a
contributing writer for The Official Autism 101 Manual, published by Autism
Today and now available through Amazon.com.
The book is
aimed at people with autism, their families and teachers.
“I’m doing
this because I want to get the message out that there is hope for people
with autism,” Hawthorne said. “The message is simple ‘here’s why they do
what they do.’”
He said for
years, parents of autistic children have been met with frustration because
they followed a doctor’s orders, and their children seemed to worsen. In
many cases, Hawthorne said, this phenomenon has been due to ignorance on the
part of the physicians.
Sometimes
physicians advised parents to take their autistic children to a crowded mall
so they would better learn socialization skills.
“They didn’t
realize they were just taking him to a place where he would experience
sensory overload,” Hawthorne said. “They see someone who is autistic blow
up, but what they don’t see is all the crowd noise is sending shock waves
through their body, and they must express it. It can physically hurt them
all over.”
Hawthorne
experiences extreme discomfort when exposed to loud, sudden noises and finds
it virtually impossible to carry a conversation if a television is on. In
this instance, he might inadvertently incorporate phrases being aired on the
television into the conversation.
Unlike
Hawthorne, most people with autism are not able to speak. Many others have
trouble picking up on social cues and do not realize it’s inappropriate to
approach a stranger and speak to them in a loud voice.
They might
also look at the world with the innocence of children.
“They are
self-centered but not selfish,” Hawthorne said. “They do not understand the
motivations of others. If someone steals money out of their drawer, they
don’t understand. It’s a mystery.”
Although
autism manifests itself in various ways, Hawthorne said one thing all
autistic people have in common is the inability to grasp abstract concepts.
He said they do not think in terms of love and respect, but generally only
understand what is tangible, or that which can be touched.
Hawthorne
said he has witnessed too much pain and heartache among parents who struggle
to handle the emotional issues which accompany autism. He wants teachers to
know autistic children are grateful for their help and parents to know their
children do love them in their own way.
“My heart
goes out to the parents,” Hawthorne said. “I want them to understand how
their children need their help and support in order to develop.”
Hawthorne
will discuss his perceptions of and personal experiences with autism on the
national Internet radio program Autism One on a show called “Get Real with
Nicki Fischer, “ scheduled to air Thursday.
The
interview can be accessed at the Web site www.autismone.org/radio.
As for his
recent writing success, Hawthorne comments, “I’m just happy to have a level
playing field where I get the same kind of attention for my ideas as other
authors get for theirs.”
For more
information about Hawthorne and his publications, visit
www.autismguidelines.com.
ABC New Fall Drama Show With Autism
Brothers & Sisters (Touchstone TV): After the patriarch of a large but scattered family dies unexpectedly, the children must work to balance their personal lives with family business, including the trials of raising an autistic child. Former Ally McBeal star Calista Flockhart leads an ensemble cast that includes Dave Annable, Betty Buckley (Eight is Enough), Rachel Griffiths (Six Feet Under), Jonathan LaPaglia, Ron Rifkin, and Thirtysomething Emmy winner Patricia Wettig.
Help Needed!!
We are in desperate need of someone who is proficient in web page design/maintenance to volunteer to manage our chapter web page. Very little work will be involved. We just need someone who understands the page and who can update pages that contain our Local Resources, Newsletter, etc. We would also like to add some more helpful links to our main page. If you can possibly help, please contact Lynda Huggins.
Heavy metals may be implicated in autism
URINE samples from hundreds of French children have yielded evidence for a
link between autism and exposure to heavy metals. If validated, the findings
might mean some cases of autism could be treated with drugs that purge the
body of heavy metals.
Samples from children with autism contained abnormally high levels of a
family of proteins called porphyrins, which are precursors in the production
of haem, the oxygen-carrying component in haemoglobin. Heavy metals block
haem production, causing porphyrins to accumulate in urine. Concentrations
of one molecule, coproporphyrin, were 2.6 times as high in urine from
children with autism as in controls.
Autism is thought to have a number of unknown genetic and environmental
causes. Richard Lathe of Pieta Research in Edinburgh, UK, says he has found
one of these factors. "It's highly likely that heavy metals are
responsible for childhood autistic disorder in a majority of cases," he
claims. The study will appear in Toxicology and Applied Pharmacology.
Lathe says these porphyrin metabolites bind to receptors in the brain and
have been linked with epilepsy and autism.
The researchers restored porphyrin concentrations to normal in 12 children
by treating them with "chelation" drugs that mop up heavy metals and are
then excreted. It is not yet known whether the children's symptoms have
eased, but Lathe cites anecdotal reports suggesting the drugs might do some
good.
The study is available online at:
http://filariane.org/anglais/DOC/MSFINAL.pdf
Complete History of the Autism/Mercury connection: www.putchildrenfirst.org
A User-Friendly Vaccination Schedule
http://www.generationrescue.org/pdf/user_friendly.pdf
Comparing Symptoms of Autism and Mercury Poisoning
http://www.vaccinationnews.com/Scandals/Feb_15_02/comparison_symptoms.htm
Homeschooling Autie Kids List at
http://www.weirdkids.com/autism/aut2bhome.htm
Communicating with Your Child's School Through Letter Writing
[Good site for information and letter writing]
http://www.nichcy.org/pubs/parent/pa9txt.htm
Revealed, most compelling evidence yet of MMR danger Sunday Express 6 October 2002
Exclusive by Lucy Johnston, Health Editor
A 13-year-old boy brain damaged after the controversial MMR jab still has remains of the vaccine in the injured area of his brain.
The alarming news is being seen as the most compelling evidence yet of a link between the triple measles, mumps and rubella jab and autism.
The boy's case will form a central plank of a forthcoming legal action by 600 autistic and brain-damaged children against vaccine manufacturerers.
Jackie Fletcher of support group Jabs, which highlights the risks of MMR, said: ''This is devastating news. What on earth is the vaccine doing in the brain? It should not be there.''
Mrs Fletcher, whose own son, Robert, 10, developed autism from the vaccine, added: ''This is the strongest evidence yet showing it causes brain damage.''
The 13-year-old, who has not been named, was developing normally until being given the MMR jab at 15 months. Days later a rash broke out, his development stopped and he began to have violent seizures. These became more frequent - sometimes every few minutes. In one month his mother, Verity, 46, from Sussex, counted 135. When he was nine, he was admitted to Southampton General Hospital's intensive care unit where doctors twice tried to break the cycle of convulsions with an anaesthetic. But each time they brought him round the fits started again.
Eventually he was transferred to London's Great Ormand Street Children's Hospital for brain surgery.
Verity arranged for the brain sample to be analysed and the results - seen by the Sunday Express - showed the sample contained traces of the measles virus ''consistent'' with the vaccine rather than the ''wild'' strain. Tissue from the boy's intestine also showed the vaccine.
The boy is now making progress and goes to a special school. But he shows symptoms of autism, memory loss and still has fits.
Verity said: ''The Department of Health has written off children like my son by refusing to acknowledge any link between brain damage and MMR.
''Because of this they are not being given appropriate treatment. They should be under the care of specialists.''
Experts say the boy's case is a minor victory for those fighting to get more recognition of the risks of MMR. Robert Sawyer, chief executive of the charity Visceral, which funds research by MMR opponent Dr Andrew Wakefield, said: ''The world must pay immediate attention to this evidence, especially when the Government is not taking the issue seriously.''
And Paul Shattock, head of the Autism Research Unit at the University of Sunderland, said: ''This is powerful. I don't know how the Government will talk its way out of it.''
An unpublished study strongly supports the new findings. Pathologists from Utah State University, US, and Trinity College, Dublin, have discovered the vaccine strain of the measles virus in the spinal fluid of 40 autistic children.
The link between MMR, autism was first proposed by Dr Wakefield in 1998. He discovered many children with late onset autism also had intestinal damage.
He believes the vaccine leaks through the gut wall into the central nervous system and into the brain, causing damage.
The Department of Health said it could not comment on an individual case pending legal proceedings. But it stressed that tests to identify vaccine strains in gut samples were unreliable.
Sunday Express Comment
Act on MMR evidence
Today this newspaper publishes a shocking report that every parent and grandparent must read. We present the most compelling evidence yet of the link between late onset autism and the measles, mumps and rubella injections. We believe that the Government can no longer insist that the jab is safe. To do so is to wilfully put the lives of our children at risk.
The Government has consistently said that the triple jab is safe. It wants to believe this is so because it seems to be the most effective way of stopping these life-threatening disease in their tracks. During the waiting time between separate jabs children can contract one of the conditions and some might not receive all three injections. But the Government has not conducted a through examination of children whose parents believe they were sticken by the MMR jab. This must be done now.
Without proper research we cannot know how many children's lives have been blighted. Neither will we know how to identify and exclude children who could be affected or exactly how to treat them. Moreover, the way is barred to those who deserve compensation. Children must not be sacrificed for the sake of dubious herd immunity
Can we ever trust MMR?
SUNDAY EXPRESS 18 June 2006
by Lucy Johnston, HEALTH EDITOR
'The Government has not looked at the whole picture'
Four years ago, the Sunday Express revealed that at least 26 child deaths have been linked with the measles, mumps and rubella vaccine. In many cases, the Government - or leading medical officials - accepted the connection.
Parents were awarded vaccine damage payments of up to £100,000 and, in other cases, experts drew up post-mortem reports blaming the MMR jab as the most likely cause of death.
Now, as we report today, two more parents have come forward claiming their babies died as a result of the jab. And, last month, Vietnamese health authorities withdrew the MMR jab after the death of one child and hospitalisation of five others. The World Health Organisation is now investigating this scare.
Since its launch in 1988, thousands of parents have reported unwanted reactions to the triple jab, from moderate “rash, headache, temperature” to severe, including brain damage, autism and convulsions. In 1992, the Department of Health conceded it got the pre-licence trials wrong when the chief medical officer announced the withdrawal of two of the three brands of MMR because they were found to be causing meningitis.
All drugs, including vaccines can have side effects. The Government accepts this - why else would it make vaccine damage pay-outs of up to £100,000? But, publicly, it claims no deaths have been associated with MMR. How can it do this when its own officials and post-mortem reports state otherwise?
Vaccine manufacturers accept there can be serious side effects, and have informed the Government of this. So why does the Government’s publicity machine continue to insist that the triple jab is entirely safe?
Instead of being open and investigating potential dangers in what appears to be a minority of children, the Government polarises the debate by implying there are no risks.The Whitehall propaganda machine really kicked in eight years ago when the press reported findings of Dr Andrew Wakefield’s explosive paper linking the MMR jab with autism.
At the time, his work was accepted as credible by experts in the field. But, instead of making stocks of single vaccines available, as Wakefield advised, policy chiefs made it difficult for parents to obtain them.
MMR uptake continued to fall. With an outbreak of disease on the horizon, publich health officials panicked. The Department of Health launched a campaign to rubbish Wakefield’s research. He was ostracised by his peers and forced to resign his post at the Royal Free. The Government risked losing face if it changed its stance and accepted MMR might cause problems in some children, but it also stood to lose millions in compensation claims. Action had also been taken against the drug companies, which is still ongoing.
Dr Wakefield has become the scapegoat for the frenzy over MMR but he is not, as the Government likes to portray him, a lone maverick. Many other doctors have concerns, and other scientists have found evidence to support his findings. But the Department of Health insists that research proves the jab is safe.
However, the Government has not looked at the whole picture. Instead of looking at the affected children themselves, the studies it cites are based on patterns of disease taken from medical records of large populations, which are unable to detect adverse reactions in small numbers of children.
When Dr Wakefield alerted the Government and vaccine chiefs to his research before publication, it promised an independent forum into his findings. This has never happened. Instead, it has called for an investigation into Dr Wakefield. The General Medical Council is considering whether to charge him with serious professional misconduct.
Figures released by the Health Protection Agency last week reveal the number of potentially deadly measles cases seen by doctors since January is five times higher than during all last year, prompting fears of an epidemic.
As Richard Halvorsen, vaccine expert and central London GP said: "With the threat of a measles epidemic, the only way many parents will protect their children is with the single vaccine. By refusing to allow this, the Government is contributing to the epidemic it seeks to prevent."
One has to ask the question: where does the Department of Health’s interests lie? Is it to protect the nation's health, or to protect officials, and the pharmaceutical industries’ lucrative patents for new combination jabs?
Autism Speaks and Kellogg Team Up
NEW YORK--(BUSINESS WIRE)--June 27, 2006—
Autism Speaks and Kellogg Company team up to bring Autism Awareness to the breakfast table this summer on more thatn five million Rice Krispies cereal boses.
An Innovative Way to Inform Parents About a Disorder Now Affecting One in Every 166 Children
Autism Speaks, a non-profit organization dedicated to increasing awareness of autism and raising money to fund autism research, announced today that it is partnering with Kellogg to bring its message of autism awareness to the side panels of more than five million Rice Krispies cereal boxes. The special Autism Speaks cereal boxes will hit store shelves beginning this month and will appear throughout the summer. In addition to explaining what autism is and that it is increasing in prevalence, the side panel describes some of the most common early signs of autism and encourages parents to talk to their pediatrician if they suspect something might be wrong.
Note: Electronic versions of the cereal box images are available upon request.
The Kellogg's Rice Krispies awareness initiative coincides with a multi-year Autism Speaks/Ad Council PSA campaign launched in April. Aimed at the general public, the ads stress that autism is more common than people think (1 in 166 children is now diagnosed with autism) and encourages families to learn the signs of autism and talk to their doctor if they suspect their child is not meeting developmental milestones. The campaign was created pro bono by advertising agency BBDO and is running across all media platforms, including print, broadcast and cable TV, radio and the internet.
"We are incredibly grateful to Kellogg for helping us to reach millions of parents with this critically important information about the early signs of autism," said Suzanne Wright, co-founder of Autism Speaks. "Parents need to be aware of these 'red flags' and talk to their doctor as soon as possible if they suspect a developmental delay. Early intervention is our best weapon against autism."
"Kellogg has a long history of offering information on health and wellness on product packaging. We're pleased to be able to share this important information about autism with consumers," said Jose Alberto Duenas, director, marketing Kellogg Company.
About Autism
Autism is a complex brain disorder that inhibits a person's ability to communicate and develop social relationships, and is often accompanied by extreme behavioral challenges. Autism spectrum disorders are diagnosed in one in 166 children, affecting four times as many boys as girls. The diagnosis of autism has increased tenfold in the last decade. The Centers for Disease Control and Prevention have called autism a national public health crisis whose cause and cure remain unknown.
About Autism Speaks
Autism Speaks is dedicated to increasing awareness of the growing autism epidemic and to raising money to fund scientists who are searching for a cure. It was founded in February 2005 by Suzanne and Bob Wright. Bob Wright is Vice Chairman and Executive Officer, General Electric, and Chairman and CEO, NBC Universal. Autism Speaks and the National Alliance for Autism Research (NAAR) recently combined operations, bringing together two of the leading organizations dedicated to accelerating and funding biomedical research into the causes, prevention, treatments and cure for autism spectrum disorders; to increasing awareness of the nation's fastest growing developmental disorder; and to advocating for the needs of affected families. To learn more about Autism Speaks, please visit www.autismspeaks.org
Recovery Videos
Stan Kurtz is dad to 4 1/2 year old Ethan, who recovered from an autism
diagnosis. Stan recovered himself from ADHD and IBS while he was working on
therapies for his son. Stan has presented at the DAN! Conference, and he is
the first non-MD/PhD/RN parent to present at the DAN! Think Tank. He also
contributes to the DAN! Physician's and Nurse's Training. He was the first
person to make MB12 into a Nasal Spray, and to better understand the
relationship between viruses, fugus and mercury. He moderates the Yahoo!
autism parent group MB12Valtrex, which focuses on antiviral therapy and
Nasal Spray MB12. Stan has also published 26 recovery videos including a
groundbreaking video of a 23 year old with AD(H)D attached to an EEG showing
a lack of brainwave synchronicity that recovers in 5 minutes after taking
MB12 Nasal Spray. Stan has presented his AD(H)D data to Dr. Sue Smalley and
the ADHD research team at UCLA and is working with UCLA on a pilot study of
MB12 Nasal Spray and ADHD. Stan is the owner of Children's Corner School in
Van Nuys, California, a unique school that includes special needs children
in the classroom and focuses on research and health as being a foundation
for child development. Stan is also the Co-Chairman of Hand in Hand Child
and Family Development Center in Encino, California, a Regional Center
Provider or Speech, Occupational, Physical, and Behavioral Therapies. See
video:
WWW.recoveryvideos.com
What is Biomedical Treatment?
By Beth Vataker, Board Member, ASA Broward Chapter
In the fall of 2005, I started a biomedical support group through the Autism Society of America, Broward Chapter. I have been implementing biomedical treatment with my son for the past year. It has been a long process to research all of this information, understand it, and then to implement it. I hope that some parents will find this brief overview helpful in trying to understand the basics of biomedical treatment.
I must first confess that I am a Registered Nurse who had firm belief in traditional medicine and would have never considered what many are calling biomedical treatment options for their children with autism. That is until I took a real close look at what exactly biomedical treatments are.
In my beginning months of dealing with autism I knew we needed to get going with the widely advertised ABA program, and for the first six months this is what consumed me day and night. When I felt comfortable with our program I started to re-read some of the literature that I had come across previously on the Gluten Free Casein Free diet (GFCF). This was something that kept coming up in numerous books.
Placing my son on such a restricted diet seemed to be so time consuming. I had to wonder if it would even work. How was I going to ever begin to understand this diet? Learning to cook these special foods seemed unimaginable for someone who lives on take out. Others before me have taken the plunge, maybe it could be done. The biggest question to myself was, "what if it actually worked? Then wouldn't I be depriving my son of a brighter future?" So there was my answer. I would not allow my ignorance of this diet decide my son's future. I would learn as much as I could and begin the diet one step at a time.
Immediately upon removing casein, our son began to sleep through the night. No night time screaming bouts with colic, no more diarrhea, no more mylicon drops each night before bed. If the diet could help so much what else could I be missing? Could it be that this group of DAN! doctors were actually on to something? A DAN! doctor is one who follows the Defeat Autism Now protocol that was produced in 1995 through the Autism Research Institute.
After reading up on biomedical treatment options I realized this form of treatment was actually related to the biochemistry of one's body! Wow! How did I miss this one for the past six months? It was time for us to contact a DAN! doctor to begin the testing. .
We chose Dr. Berger who at the time was down in Miami. He recently relocated his practice to Tampa, but thankfully comes back to South Florida every 2 months. It is he who has helped me understand why we use the supplements that we use. He has never shunned any question that I have. Every visit has ended with me fully understanding which supplements we are using and how they work.
So what is biomedical treatment? In simplest terms, it is the identifying of certain biochemical imbalances that when corrected allows the body to function better. If there are certain nutrients missing they are supplemented. If there are toxins present they are removed. In my son we have identified certain foods that seem to affect him in a negative way such as wheat, dairy, soy, food colorings, flavorings, additives, and fruit. My son takes supplements such as vitamins, minerals, and essential fatty acids. It all sounds so simple but in reality it is not.
Methionine is an amino acid that primarily comes from protein in our diet. It is responsible for two important components of our bodies: methyl and sulfur. It is methylation and sulfation that many of the supplements that we use are targeted at helping to repair.
One of the major functions of a properly working methylation pathway is to rid our bodies of toxins. When this pathway is not functioning properly, the toxins can damage organs and oxidative damage can happen. I learned through our DAN! doctor that we could actually test this pathway to see if it was damaged in my son. The results showed that the metabolites of the methylation pathway were found to be deficient. Fortunately, there are certain specific nutrients such as methylcobalamin (a form of vitamin B-12) and folinic acid (a form of folate) which can stimulate the detoxification pathway to work better.
What about the oxidative stress? What about the toxins that are already embedded in the body? The easiest way for me to answer these questions comes quoted from Dr. Berger's explanation to me. He stated that, " There is a catch-22, in that toxins such as heavy metals build up due to the detoxification pathway not working, but these toxins can also further poison the detoxification pathway. It is this reason why it is essential to test for and treat heavy metal toxicity (through a process called chelation). Often when the toxins are removed from the body, the pathways work better on their own so less supplements may be needed."
Chelation therapy has been in the autism community for over 5 years. The Autism Research Institute has taken parental ratings of successes with different supplements and drugs used for children with autism. After understanding biomedical treatments a little bit more it should come as no surprise to you that parents reported 73% of the children got better (25% showed no effect, and 2% got worse.) An overall better to worse ratio of 34:1.
The above explanation of biomedical treatments is a very brief overview. I can assure you that it is much more detailed than I can explain in one brief article. If your head is spinning with questions, and has you wondering, " Am I missing something here?" Then you are where I was a year ago. The best advice I can give you is pursue the answers to your questions.
It is my hope that one day all parents with children afflicted with autism will be told what it is biomedically that they can do for their children upon diagnosis along with the many other therapy options that they are given. It is hard to believe that mainstream medicine has not taken a real hard look at this information. Maybe one day they will catch up to the rest of us.
For now I have chosen to bring about awareness of biomedical treatments to the autism community. Who knows what next year could bring?
For further information regarding chelation therapy you can go to www.wholisticpeds.com click on individualized approaches to treating chronic disorders
For further information regarding the DAN! protocol you can go to www.autismwebsite.com/ari/index.htm
For further information regarding the Autism Society of America, Broward Chapter, Biomedical Support group you can email me at Bethvataker@aol.com
The opinions expressed in this article are solely the author's. All treatments mentioned are for informational purposes only and are not endorsed by the Autism Society of America.
New Resources Available!
The following new books and videos have been added to our extensive lending library (located at Families Helping Families, 361-0487). Check them out!
Autism Spectrum Disorders: The Complete Guide to Understanding Autism, Asperger's Syndrome, Pervasive Developmental Disorder, and Other ASDs (2004) by Chantal Sicile-Kira (FHF,OPL,ULM) This book is directed especially toward parents of children with autism spectrum disorders (ASDs). Chantal Sicile-Kira's goal is to save parents "countless hours of precious time and heartache" by sharing what she has learned navigating through the various systems. She has an autistic child of her own and she knows the ropes having spent "tens of thousands of hours" learning about autism and the treatments and interventions available, and how the various support and governmental groups and organizations work.
A Shot in the Dark by H. Coulter (FHF) This book is a MUST read for parents and parents-to-be. If it has ever even occured to you that the medical system is not infallible, this book will open your eyes to a reality that most people would prefer to ignore. Vaccinations DO cause temporary and permanent damage to children every year in this country, and many of the diseases against which we are vaccinated are not as frightening as the damage caused by the vaccinations themselves.
Perfect Targets: Asperger Syndrome and Bullying--Practical Solutions for Surviving the Social World by Rebekah Heinrichs and Brenda Smith Myles (2003) (FHF) Provides lots of practical approaches to parents, teachers, administrators, other school staff, and students. Everyone who is concerned about the impact of bullying in our schools and communities could benefit from reading this book.
The Autism Sourcebook: Everything You Need to Know About Diagnosis, Treatment, Coping and Healing (2005) by Karen Siff Exkorn (FHF) Practical advice and information from the world's foremost experts on autism -- and a mother's own hard-won lessons from helping her son recover from the disorder. With extensive appendices, including the Modified Checklist for Autism in Toddlers, Diagnostic Criteria for the Five Pervasive Developmental Disorders, and carefully selected lists of Internet resources, recommended readings, and top autism organizations worldwide, The Autism Sourcebook is the single most comprehensive, practical resource available to parents and loved ones of children with autism.
Evidence of Harm : Mercury in Vaccines and the Autism Epidemic: A Medical Controversy (2006 Paperback) by David Kirby (FHF-2) This new edition includes updates on developments after the publication of the hardback edition.
FOWL! Bird Flu: It's Not What You Think (2006) by Sherri J. Tenpenny (FHF) Unflinching, thoroughly researched, and bound to be controversial, FOWL! will change forever perceptions of environmental policy, the pharmaceutical industry and the government’s role in the dissemination of public health information. A core premise of the book: how dioxins and other environmental chemicals are contributing to the toxic load in chickens, migratory birds, and humans, leading to massive death when combined with "bird flu" and other influenza viruses. However, this is far more than a book about the environment. FOWL! examines the specter of mandatory vaccination and exposes how pharmaceutical companies, chemical companies, and agribusinesses are not separate industries but function more as "sister enterprises," working together for mutual benefit, profit, and power.
“Normal People Scare Me” Video 537 (FHF) 10 minute video created by Taylor Cross, a 17 year old aspiring film maker with high functioning autism, Normal People Scare Me highlights portions of 65 interviews conducted over a two year period by Cross.
“Normal People Scare Me” Video 538 (FHF) Based on the 10 minute award winning short film of the same title, NormalPeople Scare Me is a feature-length documentary sharing first-person accounts of life and living with autism.
Ten Things Every Child With Autism Wishes You Knew (2005) by Ellen Notbohm (FHF) - Begins with the first wish of a child - that he or she be known by one word, and one word only - "child," and not squelched by the label "autistic child." It ends with the child's final wish - that he receive unconditional love and acceptance. The remaining eight wishes tucked in between provide insight into the tools (via choices parents can make) that will honor, empower and respect their precious children and make all their wishes come true. Ten Things zeros in on the importance of sensory issues and thoroughly explains their direct link to a child's behavior. Ellen reminds parents that "seemingly inexplicable behavior ... all have a sensory cause ... No matter how unprovoked,