Victor rescued from Unsafe Autism Medical Treatments!

UPDATE OCTOBER 29, 2015
Victor is my son and visited him in July 2015 and thanks to State of Washington for halting the alternative medical treatments. The picture of pills on a dinner plate is what 1 week of supplements looked like that Victor was taking.

supplements

The first picture of Victor in August of 2014

before his piano lessons which he loves! victormusic The last two picture is when we visited Victor 8 months after getting away from the doctor that prescribed all those supplements that’s on the dinner plate. Please be careful taking your kids to alternative care! victorjuly2015 victorjuly20151

UPDATE JUNE 8, 2015
GREAT NEWS! VICTORY FOR VICTOR! I heard from court that a Guardian Ad Litem to be assigned to my son Victor to do what is best for him. He will investigate all areas of the existing Guardianship and interview interested parties related to Victor. This is awesome 🙂

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My name is Suzy Combs and I have a 19 year old son with autism. My son is not very verbal and lacks the skill to express himself and emotions. I am searching for Advocacy Support.

My son Victor and family have a loving relationship and his visiting rights have been stripped at this time. There are authorities (court appointed commissioner) working on his case but due to the court not handling a case like Victor’s before it is going to take much longer for them to take steps forward. They state they are trying to be real careful which I respect that.

As they work on this case I am searching for advocacy support for Victor and do what I can as his mom to do what is best for my son.

I have just began to read about different programs on the net and here are three of them. If you had any good experiences with any of these or have other suggestions please email at suzyjcombs@msn.com

If you do not know but want to help please forward this on. If you are getting this by twitter, will you please tweet it.

If you want to learn more about this case you can click on the link below that tells about our current battles and hope we can began to work together for my son Victor.
http://www.bendbulletin.com/health/2778600-151/washington-officials-halt-alternative-autism-treatment

Thank you!

Autism National Committee- http://www.autcom.org/about.html

Autism Network International- http://www.autismnetworkinternational.org/History_of_ANI.html

Autistic Self Advocacy Network- http://autisticadvocacy.org/home/about-asan/

Thank you Dr. Barrett! A Critical Look at Defeat Autism Now! and the “Dan Protocal”

My son with autism is 19 now. I don’t think he will mentally comprehend the best advocate he has going for him.

It is Dr. Barrett
Dr. Barrett

His work gave myself and family HOPE. The domestic court system failed to protect my son from unsafe medical treatments.

Dr. Stephen Barrett’s work was the major and deciding factor of putting my son out of harms way.

Here is a link to his most recent article on DAN!

http://www.quackwatch.org/04ConsumerEducation/Nonrecorg/dan/overview.html

Piano Lessons!

pianolesson

(Victor with his Music Teacher in Boulder, MT)

Summer of 2014 Victor receives his first official piano lessons and was in awe how he naturally picked it up.  A family in Helena, Montana hears about Victor and gives us their extra piano!  This family also had a special need daughter (in her 20’s) that was gifted on the piano and the mother told me there are so many ways to communicate to child through the piano from what they are feeling to even helping them with multiplication.  Victor is not very verbal so this discovery is exciting, exciting to get to know Victor more.

 

 

 

 

Connection through Music!

eddieviolin

You were right Eddie!  The photo above is my nephew, Victor’s cousin whom has gone home to the Lord four years ago.  Eddie had an amazing talent on the violin and piano.  He had told me years ago that he believed Victor had a natural talent on the piano.  One day Eddie was playing on the piano and Victor watched him and than sat beside him on the piano bench.  According to Eddie, while he was playing a song, Victor played his own tune making harmony.

I met a wonderful music teacher, Lori Cologne that lives in our home town of Boulder, Montana.  I had the feeling that Victor and Lori would connect and with Victor being not very verbal it was important. We took advantage of the two week visitation we have with Victor and set up his first official piano lesson last Friday.

I am sooo grateful I was there to witness Victor’s first lesson.  Victor repeated what he did with his cousin Eddie.  Lori said that she never had a student harmonize with her before and Victor was the first!  Lori was playing the piano and he played his own tune again harmonizing with her.

What an awesome discovery!  It is such a cool way to connect to your son with autism, connecting to his world!

pianolesson

vicpiano2

Happiness Costs Nothing and Acceptance is Healing

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Nephew Dustin Scott text me this today about Victor: My cousin is awesome. Don’t think he is sick. He sees the world different because he is autisitic. Don’t roll your eyes and say “That boy is dumb.” For where he falls is on this interesting spectrum. Connecting may be difficult, no matter what you try. But once it finally happens your tears will be from joy. Where is he hiding? Where is he at? Exploring his own cool world from the safety of his cowboy hat. If we could see through his eyes, the world would be a better place. No more gossip, hate and drama. It’s something all of us should embrace. Happiness costs nothing. He is full of love. There is so much he can teach us. Our gift from above.

Special Needs Ministry

By Sheila Allen
REDMOND, Ore. — Family members with special needs are often the center of love and affection in the home, but those needs can also be an isolating factor. A new ministry is emerging at Highland Baptist Church in Redmond, Ore., to make a difference for families.
A longtime advocate for those with special needs, Marci Campbell arrived in Redmond a year ago when her husband, Barry, accepted the role as senior pastor at Highland Baptist. Although the ministry is in the beginning stages, the church has already seen four people baptized from families who otherwise would not be able to attend otherwise.
“I have always been drawn to special needs,” Campbell said. “It began in high school when I tutored kids with dyslexia. My dad was a pastor, but in church I sat in the deaf kids section. Then I went to college with a goal of teaching in special education, but then realized I wanted to work with families, so it turned toward social work. I began to work with high risk infants in intervention and then followed up with services to the family.”
Campbell began her own family after she and Barry married, with her son born prematurely and a special needs diagnosis of his own to come. Campbell began to work at LifeWay Christian Resources as a special needs consultant, leading conferences and helping raise awareness among churches for the opportunities available to churches to meet practical needs. She also worked for several years in the Tennessee Baptist Convention assisting churches and individuals.
“I have helped churches in beginning a special needs ministry,” Campbell said. “In my own home church in Tennessee, we had 30 people in our special needs classes, including children, teens and adults. These were families that opted to have a member in specialized classes, while some chose to remain in regular classes. To see someone in Bible study with the lesson pointed to their needs and learning style, it is just amazing.”
Often, families stay home because churches do not offer the care that allows them to enjoy Bible study and worship for the whole family. The Census Bureau, using data from the American Community Survey (ACS), shows more than 16 percent of the population over five years old in Oregon and Washington as identified with special needs, and Idaho at 15.7 percent.
“It is awesome and an absolute thrill to witness Victor get so excited to go to his Bible class — he ran up the church stairs belly laughing and had the same level of excitement when I picked him up,” said Suzy Combs of her 15-year-old son who is diagnosed with Autism. “He is not very verbal and to watch him be so filled with joy when entering the church, I wanted to be in his head and experience what is going through him.”
Things are beginning slowly at Highland, with two permanent teachers in special needs classes and a rotation of helpers giving assistance. Another new opportunity has begun with a connection to a local Special Olympics team.
“We met some folks from the Oregon High Desert Special Olympics adult team, who are called the Mountain Lions,” Campbell said. “In January, they started using the gym here at Highland for practice two times per week. This has given us new opportunities to tell folks about our classes at the church and one mother I told was so excited to be able to come to church.”
Plans are in the works for a one day Vacation Bible School geared specifically for those with special needs this summer. While Campbell has found that word-of-mouth publicity is best, they will also use printed material and other methods to highlight the event in the community, with a main objective to get word to those families who couldn’t go to church any other way.
Campbell has found they are able to minister to people with a variety of special needs at the same time and could include those with Downs syndrome, Cerebral Palsy, Attention Deficit Hyperactivity Disorder (ADHD), Autism, Asperger’s Syndrome, or learning disabilities.
“It is a real joy to be involved in the special needs ministry at HBC,” said Debi Imig, a lead teacher of the class. “During our singing time, the learners worship with such freedom — laughing, playing instruments and dancing — without any obstacles in the way. Each week I feel like I receive more than I give and it’s a blessing to be able to share God’s love with them.”
“Highland Baptist Church has a desire to reach everyone for Christ,” Campbell said. “Millions of Americans are unable to attend church because there is no place for their child or family member with special education needs. We began our special needs ministry to provide an option for families. Our goal is to adapt for individual needs and present Jesus at the closest level possible of their understanding in a Bible study designed intentionally for them.”
The Campbell family has been extremely pleased to find many services and helps in central Oregon for people to become as independent as possible, such as parks and recreation therapeutic courses and fitness and theater classes that are fun and adapted to meet the needs of those attending.
“People seem to be open to those that need a different way of operating here,” Campbell said. “Often it is just the fear of the unknown that keeps us from helping people. It has been a delight to come here and our teachers are wonderful. While we are just in the beginning stages, we will probably need to offer more classes after our Vacation Bible School this summer.”
Those who wish more information regarding meeting the needs of families with special needs members may email Marci Campbell at mcsoundmgmt@msn.com.
The Mountain Lions, an adult Special Olympics team in Redmond, Ore., gave the above photo in appreciation to Highland Baptist Church for allowing the team to use their gymnasium for practice during their season. This has given the church another opportunity to minister to those with special needs.
Students learn at their own level in a special needs class at Highland Baptist Church in Redmond, Ore. The ministry has allowed families to attend church who otherwise would not be able to come. From left are Tiffany, Marci Campbell, Victor and teacher Debbie Imig.

Autism Alternative Treatments-Parents do your Research!

vicandi

October 4, 2014

The above picture is my son Victor and I couple years ago.  Recently his treating doctor has been charged by the State of Washington that is directly related to my son.  The charges came out in June 2014 and it took three years of battle to get to this point.  This case is still open and the next hearing may be Spring 2015.  The link below shows these charges.  The post below the link is what I posted in April 2013 for parents to do their research!  I hope that this story will help others stay away from the pathway we went.

http://www.casewatch.org/board/med/smith/charges_2014.shtml

*Since these charges of June 2014 they have increased the dosage amount of the herb gota kola from 6 to 10 capsules for a total of 4750 mg and as a mother I research everything they do because it is out of mainstream and I don’t like what I read about the potential of harming of the liver.  This is just one example.

http://umm.edu/health/medical/altmed/herb/gotu-kola

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If you have a loved one with autism, you are blessed.

The journey our family has experienced with our son Victor (above in the picture with me) made us better people. He is more perfect in ways than “normal developed” people like us, whatever normal is.

If you are considering or are treating your loved one with autism by alternative care and/or D.A.N. treatments, please do your own research. D.A.N. stands for Defeat Autism Now.

Our son with autism is 18 now and was diagnosed between the age of 3 and 4 years of age. We have had so many trials and errors, and I hope sharing what I experienced will help you.

First of all, do not let a provider put you in a panic like there is no tomorrow. Do not let a provider provoke a fear in your head that was not there before. Do not panic. Slow down and get to know your loved one with love, fun and acceptance. You will have success with early intervention. Find any way you can connect to their world, and I guarantee you will learn from them.

It took me years to find the help I needed, so I will go over a few of my resources. I really hope you take the time and research ways to avoid harm’s way and dangerous treatments. If you are convinced that an alternative medical treatment is going to help your child, than please look at all your objectives and look at the resources below that have already helped us.

Our son has been treated by a D.A.N. provider for years. It is a common practice by D.A.N. doctors to have your loved one with autism on 20 to 30 supplements and some, or maybe all, support the Urine Provoking Lab test to test for toxins.

After our son was on many supplements I requested that we stop and slow down since 2 to 4 supplements were being added at a time. There is no way one can tell what supplement was working when you add so many at a time. Do you know what happened to our son when we suddenly stopped all the supplements after being on them for many years? Nothing! It was refreshing to find this article from a past D.A.N. doctor and his story. His link is below and he experienced the same thing we did.

http://www.autism-watch.org/about/bio2.shtml

After many years of being on the D.A.N. treatments, it did not matter how the cocktail supplements were changed, added or subtracted. Our son improved at the same slow rate with harmful reactions along the way. What is unfortunate, as you are experiencing a heavy mental and financial burden, you could have been using the time and energy to do proven treatments and spend more “quality” time with him. If you are using a provider that recommends to do chelation treatments or chelation treatments from the results of a urine provoking lab test, take caution. Below are links from the F.D.A. and State of Oregon Medical Board cautioning the public about chelation treatments.

http://www.fda.gov/Drugs/ResourcesForYou/Consumers/BuyingUsingMedicineSafely/MedicationHealthFraud/ucm229313.htm

http://www.oregon.gov/omb/board/philosophy/Pages/Chelation-Therapy.aspx

After many years of restless nights knowing my son was being harmed and being in harm’s way I kept praying, knocking and researching. I am Victor’s mom, and I know him better than most. I have and had such a connection with my son that I knew when Victor was going to have a seizure before he had one. With that, it should validate that my fears were something to act on. When my son was on about 30 supplements, I searched for help on Autism Blog sites and did get it. I really got a responses when I put his treatments plan on twitter and asked, “Is anyone having success with this treatment plan?” One of my first responses was from two people with autism, and they were sickened by it and grateful for their support! Thank God someone reported me to Dr. Barrett stating my son is being abused. Then I saw one of my fears become real, and that fear was the urine provoking lab test.

If you are considering treating off the provoking lab test, please do your research first on this test and the link is below.

http://www.quackwatch.org/01QuackeryRelatedTopics/Tests/urine_toxic.html

I have gotten great support and help from other people such as Dr. Robert Rust and Temple Grandin.

Dr. Rust is a neurologist who treats children with autism. When I emailed him looking for help and answers, I received this email from him:

I cannot provide a professional opinion about your son without a history and examination. But I am willing to comment in general about the DAN! approach to treatment of autism. It is based on theories concerning autism that are either entirely speculative or rely on “scientific data” that has been entirely discredited. Autism is a neurological systems entity with a wide range of degrees and manifestations and as in any such variable entity every person with manifestations must be treated as an individual with careful selection from among the manifestations as to how treatment (not only medical treatment but other appproaches) should be selected and then carefully evaluated to demonstrate effectiveness without side effects that outweigh benefits. It is likely that all forms of autism are, like all forms of human function and behavior, to some extent genetically determined. Some forms are proven to be almost entirely genetically determined (Rett syndrome is an example) and we now understand a great deal about how the “abnormal”: wiring develops and how it leads to “dysfunction.” I use quotation marks because if the whole world were populated with individuals with autism things might work out at least as well as they do for the rest of us. The problem is that 1) the world is not made up in that way and therefore some accomodations must be made for those with various forms of autism and 2) seizures and other problems that occur in some individuals with autism are disease processes that require treatment. I share your concern about doing so many things at once and some “therapies” for autism are dangerous and should not be used, such as chelation–the use of which is based on laboratory data from “DAN! approved laboratories such as Rocky Mountain Laboratory that is likely almost entirely fictitious. There are many child neurologists in the country who can provide excellent care for individuals with autism and they are the individuals that ought to do so. If you want some informatin that is useful to parents concerning these issues and are used to going “on-line” find the websites of Temple Grandin (who has a form of autism) and of a woman who calls herself “autism diva” who has a child with autism. Best of luck to you and to your son.

Rob Rust

Robbert S. Rust, MA, MD
Thomas E. Worrell Professor of Epileptology and Neurology
Professor of Pediatrics
Director of Child Neurology
University of Virginia

I recently received an email from Temple Grandin and briefly told her about my son’s current treatment plan and this is her response.

Dear Suzy – Twenty-five different supplements is definitely excessive I have observed that the dairy-free and wheat-free diet helps some kids. Many parents report good results with fish oil supplements. Some of the other things that are often helpful are B6 and magnesium, and probiotics for constipation and digestive problems. You could try removing one supplement at a time. Change only one thing at a time so you can observe changes.

Sincerely,

Temple Grandin

I hope the above information will help with your research. You are more than welcome to email me at suzyjcombs@msn.com with any questions you may have.

“Autism” By Dustin Scott

Autism

by Dustin Scott
vicandgirls

(Victor with cousins Amber and Jessica)

Autism is the disability/illness I chose to do my assignment on. When I found out we had to do a paper on some sort of disability there was no doubt in my mind that Autism was the disability for me. My cousin Victor is Autistic, before he was born I hardly knew what Autism was. With something like Autism you don’t really look into it until it is knocking at your front door. At a very young age Victor opened my eyes and my world to the fact that not everyone is the same, and that people with disabilities are still people, this gift is something I will never be able to repay Victor for and will always be extremely grateful. After researching Autism and looking back everything I was unsure about with Victor growing up all seems to make sense now, like how he would hardly ever make eye contact with people or how he would always run around with an oversized cowboy hat on his head (It was sort of like his security blanket). Growing up I was told he had Autism and that’s what made him a gift to our family, but that always left me with what question. What is Autism?

Autism is a general term for a group of complex disorder of brain development. It can by characterized in different degrees; such as, difficulties in social interactions, verbal and non verbal communication and repetitive behaviors. Similar to our experience with Victor Autism appears to begin in very early brain development, and signs of Autism start to emerge between two and three years old. Victor started regressing around three years old and stopped talking by age 4.
When Victor was born he was referred to as a “blue baby”. He was full of amniotic fluid and they had to do CPR on him the first and second day of his life because he stopped breathing. The clearest evidence of the Autism risk factors include events before and during birth, such as, maternal illness during pregnancy, high age of the parents at the time of conception (either mom or dad) and difficulties during birth, particularly difficulties involving periods of oxygen deprivation to the baby’s brain (like what happened with Victor). Now do not get me wrong, I am not saying 100% that this is what caused my cousins Autism, I am just saying research says it is a possibility.
The Autism umbrella covers a huge spectrum, and each person with Autism is unique. If you have met one person with Autism, then you have only met ONE person with Autism. Because the spectrum is so large and everyone is completely different just because they have Autism does not mean they are all exactly alike, just like me and you are different, they are different from everyone else as well, we are all unique and none of us are exactly alike.lelavictor
There are many types of treatments for people with Autism, and many people improve radically, however as of right now there is no cure for Autism. Depending on the person, certain treatments can be more successful than others and people with Autism can increase their skills, but they are still Autistic and will always perceive things differently from most people.

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My family is blessed to have Victor in our lives, and I will end this paper with a quote from my Aunt Suzy, Victor’s mother, “Our family has learned to be better people getting to know Victor.  Most of us are naturally selfish, like material things, gossip about others.  People like Victor do not know what “gossip” is so they don’t do it.  He is happy with simple things and does not care about the material things we desire.  The things that make him happy don’t cost anything such as laughing together, spending time together, sitting on a rock enjoying a view and singing.”  I think if we all could stand to learn something from Victor and if everyone could see through his eyes, the world would be a much better and happier place.