Sunday, September 30, 2007
What has happened in 9 yrs?
- 1997: my almost 2 yr old son, Jacob stops talking. Biting and scratching are off the scales
- 1998: Jacob is diagnosed with Autism/PDD. We're told they don't know what causes and there
is no cure. Sorry.... I asked about the connection between my husband's Guillain Barre Syndrome and Autism. Genetic predisposition? Immune related? No, sorry ....
Frustrated, I start to do what I know best, research ...... Jacob is offered <2 hrs of service a week by ourlocal Public school system-spec ed.
Angels were looking out for Jacob on the days he was evaluated byDr CT Gordon. He said Jacob was 'an extremely bright and intelligent child who would one daybe an engineer or mathematician'. He recommended ABA.
We contracted with NJIEI, A LovaasReplication site in N.J. after being laughed at by the school system. Again, angels were on duty.
We were given a wonderful consultant named Debbie Engerran. Friends and family formed a groupand they raised over $60,000 in 3 yrs to pay for the program (7 days wk/ 6 hrs day).
- In the meantime, we found a local DAN Dr who said he would help Jacob. Help? He couldn't
even read the blood test results. Jacob endured B12 injections and horrible vitamin/mineral
concoctions I had to grind up and feed to him because the DAN Dr said it would help.
We followed a strict Gluten/Casein free diet, which did help. But we finally 'got smart'
on the day this DAN Dr tried to given Jacob a Polio booster against our wishes and behind our back.
We discovered what huge doses of vitamins and minerals will do to a body. And we found out thatthis DAN Dr wasn't even treating Jacob's severe anemia and couldn't even tell us why
his immune system was 'over-reacting'. "We often see this with these kids," was his response.
- Early 1999: I attended a local ABA support group meeting where I met a father who had 3 childrenon the Autism SPectrum. He told me about this doctor in California who was treating his familyfor Neuro Immune Dysfunction. For days I researched this pediatrician ...
I called his office and got an appointment for Jacob. Finally, after so much time lost,
Jacob was finally on the road to healing.
- NIDS = Neuroimmune Cognitive Dysfunction. Dr Michael Goldberg.
http://www.nids.net or http://www.neuroimmunedr.com
Dr Goldberg seems to have a '2nd sense' about our kids. Perhaps it's because he's been there
with his wife, diagnosed with CFIDS and then cancer?
Dr Goldberg uses common sense and medical research to treat our kids.
He is on the cutting edge of treatment for our kids and yet has been scoffed and laughed at
by DAN, CAN, MIND, NAAR ... and whatever other organization has sprung up like a weed
these past 9 yrs.
Under Dr Goldberg ever watchful eye (yes, even from California) Jacob has thrived and gotten better. His immune system is 100% calmer and he looks like a 'regular little boy'. Sure, we have those annoying stims and negative behavior outbursts. But his eyes are clear and his thoughts wide open. Dr Goldberg doesn't believe in snakeoil treatments or 'the flavor of the day' like HBOT, chelation or Transfer Therapy.
He uses blood tests and neuroSPECT scans to see what cannot be seen with the eyes.
Where is Jacob at today? He eventually went from ABA to the school system where they did nothing with him for 5 years. We got an advocate and finally a lawyer and now Jacob's at Kennedy KriegerInstitute making meaningful progress. We email Dr Goldberg updates once a week; speak with himonce a month; and visit him once a year. We found a regular pediatrician in our area who is willingto work with us and Dr Goldberg.
And Dr Goldberg is finally going to get the recognition he's worked so hard to get.
"Good things come to those who wait" and we've been waiting a long time .....
for some ideas on stories, you might want to read the blogs below. Parents are angry. Darn right we are. No where in history has there ever been an epidemic that got ignored like autism. "Awareness" is a joke- being aware does not help fix our kids. Imagine being "aware" your child has leukemia, and the doctors are "aware" your child has leukemia, but instead of helping your get your child well, they recommended you go on a leukemia fundraiser walk to raise "awareness? This is exactly what's happening in autism.
Our government refuses to help our kids, our medical centers and medical society refuse to help our kids (unless you want psych meds- they hand those out like candy). This is an epidemic of never before seen proportion, and we've got treatments and therapies that can help these kids- but 90% of them are completely uncovered or paid for by any state services, schools, or insurance companies. Imagine having a child with leukemia, and having to pay CASH for all of the treatments? Welcome to autism- because that's what's happening.
Treatment after treatment is either called "experimental" (chelation, gf-cf diets, supplementing vitamins and minerals, food allergy treatments, etc) --or else called necessary (ABA) - but then refused insurance and medicaid coverage. Autism rates outrank childhood cancer, diabetes, cerebral palsy, and down syndrome combined....but no one has a telethon to raise money for our kids.
One giant organization is raising money left and right- to look for "those genes". Sick, sick, sick- there is no such thing as a genetic epidemic. We need paid treatments. Generation Rescue did what the CDC has REFUSED to do- conduct a survey comparing vaccinated vs unvaccinated kids- and the results are incredible- read for yourself (link below)
Here's some eye openers too:
Saturday, September 29, 2007
This posting was submitted from a person who wants coverage on vaccine ingredients and biomed treatment. This item was emailed to this blog---AR
I wish the media would cover:
-Toxic ingredients in childhood vaccines, including aluminum, formaldehyde, small amounts (STILL!) of mercury, and this among other valid reasons parents are choosing not to vaccinate
- the flu shot still contains a lot of mercury
-kids are recovering with biomedical treatment
At the same time, a lot of mothers I have talked to call their child autistic....I think for the series we will refer to people as having autism....
What do you think?
Abi Marsh, Discovery Toys Independent Education Consultant
Phone: (678) 372-8613
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Ask me about Autism Support Toysand Workshop for Parents, Educators and Therapists
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How about making it a nationwide reality series which features what
ADULTS living with autism spectrum disorders go through 24/7/365?
People MUST be educated, trained in society about autism and realize
that it isn't all about children (even though early intervention is
We are also greatly failing that so called village HIllary so often
mentioned. Just call me a 47 yo single AS female, employed FT. Also a
refusenik at any kind of references to Peter Pan or "childlikeness."
Where to Start Addressing Important Autism Issues?1 ~ I think one of the biggest things the media misses is to focus on how can we help families with these kids survive financially. So many of their treatments are considered, "alternative," and the family has to struggle to pay for it. Usually one parent has to stay home to be there to help the child through school, in home therapy, ect. and the other parent is suppossed to make enough money on their own to pay for all of the so called, "alternative," treatments. Getting disability to supply money for your child is kind of a joke too. Unless you make almost nothing they will give you nothing. How are we suppossed to help our kids when we can't afford their treatments or we have to pick and choose which ones we do because we can't afford it? Does most of the world know what it feels like to have a child depending on you for treatment that may make or break their future and you can't give it to them?
As a parent that loves their child like nothing else in this wold it is absolutely devestating. You feel like you are letting your child down everyday. Not to mention that many insurance companies will not cover children with Autism. My husband lost his job and we lost our insurance. When we tried to find new insurance it was a nightmare. Every rep. I would talk to would be ready to sign me up until they heard that my son is autistic. As soon as they hear that they would tell me, "i'm sorry we can't cover you." That would be the end of the phone call. 2 ~ In addition, IEP's are a nightmare for parents because they are fighting to get what their child NEEDS and the schools fight them on it. While they are battling the school their child is going without services they desperately need and falling further behind.
There are some political issues such as funding and testing that supplies that funding that definetly play a role in the types of services the school will provide for our children, however, it's concerning that it all seems to come back to the money. If the bottom line is that schools are having trouble paying for these services then shouldn't we be addressing how to overcome that problem? With as many children that are now being diagnosed with Autism it should become increasingly obvious that we need to do something to provide these children with a fair chance at an appropriate education so that they may one day become productive members of our society.
As parents I cannot express how horrible it is to have to fight a school system to provide services for your child so that they may have a chance at a bright future. It makes our hearts ache to watch our children take a back seat to nuerotypical children. While it is equally important to provide an appropriate education for nuerotypical children our children should never have to be left behind.
3 ~ While I think it is admirable that many talk show hosts are trying to raise awareness about autism I think it is also important that they try to find guests for their shows that are relatable to the vast majority of parents dealing with this issue. When the guest speakers are celebrities, (no offense to any celebs with autistic children...ultimately we are in the same boat) with massive amounts of money to help their children, it allows the aspect of financial hardship to be overlooked. The majority of parents that have children with autism STRUGGLE to afford the treatments for thier children and recieve minimal, if any, help from their county or state. My own family for example, had to struggle for approx.
5 months strait working overtime to be able to afford the testing necessary to provide treatment to our son. After the testing was done it cost us approx.: $100. per month to retain a DAN doctor, $122, per month for B12 shots, $350. per month for bio-supplements, $300-500. per month for the GFCF diet (we have 2 kids on the diet) and thats with only one parent working because I had to stay home to be there when my son was getting his therapy which was 40 hours per week in my home. I would do it all over again to help my son, but, our family has definetly struggled and we continue to. The point that many families with children with Autism go through this gets lost when the main speakers are celebrities with a much higher income than the average family.There have been many other wonderful points brought up about the necessary awareness in different areas that need to have attention drawn to them. The bottom-line is there is still lots of work to be done. However, we as a community of Autism - parents are a strong community, a determined community, a dedicated and loving community that will not give up in raising this awareness. We will stick together for the betterment of the future of our children.
I am sure that EVERY parent that response to this would say that schools need to be aware of this and help our kids the right way with US included not pushed away or treated unfairly. We have the most problems when it comes to schools but also the SSI system. Almost every community has NO where to turn too for help or support. We as parents and our children need a place to go, have fun, socialize with our ill kids, and be accepted. We need help with funding and information in opening up a place like this. The higher functioning kids needs a place to also go to learn social skills.
Another big problem is it takes years for the right diagnoses. Where I live, we do not have very good doctors nor are there any kind of tests that are offered around here, they just diagnose these kids by way of questions on paper/form. Not only does the school not help but when you write to the state, they do not offer any help or concern if you even get a response back. These kids need and deserve a chance in life. Some of our most famous, richist, and smartest people have Aspergers, like Eisnstein, Lincoln, and recently, Bill Gates??? As the years has passed, it has gotten harder to go through life, let alone become someone that people look up too. I hope that in your efforts, things change on this spectrum for the better.
Good luck to you and all of us going through this.
Friday, September 28, 2007
It is a subject that has a billion different stories and each of those stories you will find passionate people on both sides of the debate…which in my shoes…makes it extremely complicated on how to cover such a topic. This is why we decided to start this blog. We want you to be involved in the process of journalism and help us understand your story.
Ashley, Want to do what other journalists haven't? Do a story with autistic adults in it. Do a story about how the issue isn't combating autism, but accomodating our autism, expanding opportunity, inclusion and acceptance. Afterall, your child will be autistic a lot longer than the "fight against autism". But, your editor might not want a story about autistic adults and acceptance and accomodation, it's not very "sexy".CS
Kristin L said...
I am a mom with the Autism/Asperger's/ PDD Awareness that you posted on. I think that you should also include awareness in the schools and how a lot of schools do not know what an appropriate program for an autistic child is. For some of our kids the best thing that they can do is be "mainstream" with "typical" children but schools have tended to play doctor and push aside diagnosis and deny services. There is money going into research but not a whole lot goes into therapy. This comes from Jenny McCarthy's book, "Luekemia affects 1 in 25,000 and has $310 mil in private funding. Pediatris AIDS affects 1 in 8,000 and has $394 mil in private funding. Autism affects 1 in 150 and has $15 mil in private funding."THis is why it so important for stories like yours to get more than awareness out. Autism is here and it is not going away. What does the number need to be for our children to start getting help and not judged. Please stress that like snowflakes, there are no two Autistic children alike. Our lives are difficult and hard and so rewarding cause some of us have gotten the early intervention and our kids are improving and learning how to do things that many of us take for granted.
Also cause this is mainly a "Boys" disorder with 1 in 96 being boys, don't forget the girls. When y ou see pieces, it is usualy about boys but our girls are out their too. BOth my son and daughter are on the spectrum, with two very different types, and I do not think that the girls get really any attention. You might want to include a piece on Autism and girls.
September 28, 2007 8:04 PM
one thing the media really need to know in my opp. is that there is real
born with autism that can not be cured and is a brain disorder. then
there is this environmental autism that you hear most about that kids
are recovering from. it irritates me that they are saying its curable or
they they can recover from it. they need to be more specific. my son has
server autism. he did not regress. He was born this way. they really
need to label this environmental thing differently because they are
making it look like us mothers of kids that really have true blue autism
are not doing these things to recover our kids. i assure you i have
tried everything safe. the only thing that comes close to helping my
child is medication for behavior, ot, speech, and aba. please if you say
anything say that its not the same "autism". this autism that is on the
rise is not the same thing. its not even close. there is still real true
autism and its not going to change. i can tell you that in my own
research that true autism (what i call born with) is not rising. in fact
i have only talked to one other mother out of a couple thousand on the
computer that child has what my son does. this environmental autism that
so many are overcoming is what is 1-150. born with autism is still
1-10,000. yet this is never said. everyone hearing it on the tv thinks
its just one thing.
It is a very EXPENSIVE disease for which insurance will not cover many of those expenses. Yet, insurance will pay $100,000 for some acute disease a person has. That's discouraging. One Mom commented when her father (either in his 70s or 80s--sure still full of life, yet in the ending years of his life), had surgery for an acute condition and then complications, insurance paid over $100,000. Yet, insurance would not even consider a fraction of that kind of money for her child, (AT THE BEGINNING OF HIS LIFE). Insurance, as well as the government, has yet to act upon the fact that autism is CURABLE. But, it costs a large sum of money in the first 5-7 years of the child's life. I feel strongly that if the government does not get a handle on this soon it is going to affect society in general.
You think, what in the world are you talking about? Sure autism affects a lot of people, 1 out of 160 or less. But, in reality there are degrees of autism spectrum disorder. As one doctor at Washington University stated. Everyone has a blood pressure, but at what point do you state the person has high blood pressure. The same goes for being on the autism spectrum. Everyone is on the spectrum. But at a certain point the person's personality quirks are so great that it impairs their ability to exist in society and then they are considered having Asperger's, Autism, etc. But, you have a lot of people with ADD and ADHD, poor social skills, depression, anger issues, diabetes, immune disorders. And, all of these people are on the spectrum due to the chemical imbalances they were born with (just as kids with autism) and then the environment exacerbated. The cost to deal with these problems puts a drain on the economy due to loss of productivity, being unemployable, killing kids in high schools, government spending for special education, etc.
The medical community and the government need to realize that there is a way to deal with this issue. Cut down on the environmental assaults, provide the necessary funds to deal with the chemical imbalances early on in life and you will decrease the cost of immune disorders, depression, diabetes, IBS, etc. in later life.
My name is Jennifer and I am the mother of 2 beautiful boys. My oldest son is Autistic. He just turned 5 yrs. old. We have done ABA, Speech, GFCF diet, Bio-treatment and in November he will start a therapy to help him develop Social Skills. I'm not sure what kind of information your looking for exactly, but, if you let me know I will help in any way possible. It's important that we spread awareness about Autism and if I can let me know. Good luck!
I am the reporter for the series, "Combating Autism from Within."
I did a story back in July about Autism. Through the huge response I received, we have decided a series is needed. We have a team for the series to make sure we do our best to cover this passionate topic.
Any and all ideas are welcome...for now we are using this blog as free flow of information.
Our goal with the series is to inform the public about the spectrum...you tell us what you think we should cover!