Wednesday, October 3, 2012

Everybody want's some.. I want some too!

We've been doing bio-medical intervention with my boy, Aydan since the beginning. Upon learning of his autism diagnosis, I never hesitated to consider it. People will often ask me "..yeah but does that stuff work?" My answer is something like this, "switching from Wonder bread to organic gluten, yeast free Food for Life bread will hurt nothing but your pocket book.. and don't you function better when you're healthy?" I'm very open to exploring the options of bio-medical interventions but there are a lot of snake oil salesmans out there, so I research quite a bit. The main thing I look for is that it be established, logical and safe.. AND if it's not approved by the FDA.. that's even better. If it is potentially harmful or seemingly ridiculous, we move onto the next thing... There's no shortage of new things to try.. try.. and try again.. The only problem is, it's pretty much NEVER within our family's means. The high costs of organic, gluten free, soy free, egg free, dairy free, uncured, dye-free, all natural, sans pesticides, sans GMO, sans money to pay for it.. Get my drift? And the other hard part is.. it isn't a cure. It's not! I've heard stories of non-verbal children talking within 3 days after beginning a Gluten free, Casein free diet but I have also heard of people who win the lottery... I have NEVER met any of these people. I have NEVER met someone who cured or recovered their child's autism with one simple thing. It is always a myriad of therapies.. generally both traditional and non.. done over several years and we have done a lot of them over the past 4. I won't say all by a long shot but A LOT.. What.. you might ask? Oy vey.. Here she blows.. DAN protocol, chelation therapy, gluthathione, DMSA, Vitamin Therapy (list way too long), AIT (Auditory Integration Training), RDI (Relationship Development Intervention), ABA (Applied Behavioral Analysis), DIR (Floortime), Hanen Language program, Speech therapy, Occupational Therapy, Physical therapy, Special Day school, Intensive autism class, (we've had to sue the school incurring immense legal fees to get many of these by the way).. Uhm.. where was I? Oh.. right.. Vision therapy, Music Therapy, Hippo (horse) therapy, Mastgotova, Quigong Sensory Training, Chiropractics, HANDLE, CEASE therapy, Miller Method.. Am I forgetting anything? Oh yeah.. the diet, SCD (Specific Carbohydrate Diet), GF/CF/SY (Gluten, Casein/dairy, Soy free), Candida diet.. Oh that's right.. also Anti-fungal treatment.. wait I may not be finished with the diet stuff but I haven't a lifetime to write this essay so let's move on. Anti-fungals? Yes.. let's talk about yeast, Extreme high dose pro-biotics, fermented foods, garlic, oil of oregano.. Uhm... other stuff.. And then LOTS of other stuff and at one point I think we did Nystatin and Difulcan until we just kept it au naturale. What am I forgetting? B-12 injections? Yeah, those too. So whatever.. I'm exhausted. Some of it has made some positive changes, some of it we couldn't afford long enough to tell, and some others will have to try again.. But there's never a shortage of recovery stories and as long as there out there, I have the energy to try again.. Not necessarily the money.. and not necessarily the energy either to be honest but I do it anyway. To answer the question once again, does any of it work? Well, yes some works for some.. and we'll keep looking until we find that some. I definitely want some.. don't we all? So what's this essay about? Right.. Biofilm protocol. Our DAN performs the Biofilm Protocol as follows: The following supplements should be rotated every 3-4 weeks. Start with the Microbial Maintenance. - Microbial Maintenance Plus Artemisinin capsules: 2 capsules daily, may take 1 capsule twice daily $71.20 - NutriBiotic GSE (Grapefruit Seed Extract Liquid): 1-6 drops by mouth once to twice daily (best tolerated when taken in water or juice). $9.99 - Biocidin soft gels: start with 1 soft gel daily and increase to 2 soft gel daily as tolerated. $48.95 - Pharmax Caprylate Complex: 1 capsule 3 times daily $18.54 So those little numbers after the words are monies.. monies we don't have because of everything else. Can't I get a job? I wish.. God please don't strike me down for being ungrateful. I'm not ungrateful.. I'm really not.. I just need more money. God you never told me life was so expensive. How do people live off the grid with no money these days? Does that still exist? If so, please write me and tell me how as I'm desperately looking for a way out of this mess. Until then.. if you could please help (if you can), we would be very appreciative and God will hold a seat for you in heaven.. I can't confirm that but let's hope, right? We are raising funds for Aydan's Bio-film Protocol!

Saturday, June 16, 2012

Living in Denial.. I think!

I have come to realize that I am living in denial.. maybe. I accept.. I accept that life isn't fair.. Well, no I don't! I want to.. Well, no I don't! I want it to be fair.. It isn't! I understand it isn't fair but to understand, is not the same as acceptance. Life?? If it is not fair, then what is it?? For me, it is painful, it is difficult, it is challenging, it is full of love and joy. It isn't hard to find traits within my son to love... his face, his smile, his dimple, his laugh, his hug, his touch, his eyes when they are fixed on mine, the look of anticipation when I'm about to read the part in Where The Wild Things Are when the wild things ROAR their terrible roars.. his being.. his soul is the very light and energy that love itself revolves around. He held this light before his vaccine injury and since it has remained. So why am I not satisfied? But I am.. I am satisifed with the light.. the being.. the soul.. but I want more. I want the person.. the TRUE person within to emerge. Who are you Aydan? What do you like.. what do you see.. why does the grass feel good (or seem to feel good) on your bare feet? What is in your heart? Who are you? I have never entertained the notion of perfection. If I had a perfect child, why would he want me as a mother? I resent the notion that by wanting to know my son.. wanting him for who he is.. who he is really.. who he was before vaccines.. who he was meant to be... is an effort to make a robo-Aydan. As if I wouldn't be completely happy with a nerd, geek, pierced Emo.. I could care less about perfect or normal or whatever societal idea of perfect is.. and I know what you're thinking.. but no.. this isn't denial. So, how am I in denial? I deny that this maybe the way things will always be. I deny that he may always need someone to help him, I deny that he may never have a friend.. I denied it at age 3, because "he was only 3".. I denied it at age 4 because "he was only 4".. I denied it at age 5, because "he was only 5"... Age 6... Age 7... Age 16? I deny that I will die.. I deny that I will leave this world without knowing he's taken care of.. I deny I will leave this world without knowing he's free from this prison, in which he lives.. I deny son, that when I'm gone there will be no one on this Earth to value you.. as I do! Tell me son.. What do you like? What do you want? Who do you want to be when you grow up? What does your voice sound like? How does a lemon smell to you? Will I ever know? Will I remain in denial, that I may not? Can I accept that? Will I? If I say "yes", does that seal your fate? If I say "no" does that mean I cling to tight? I've heard stories in my life of couples with grave difficulty conceiving a child.. for years they try.. they long.. they prayer... spend thousands, sometimes millions of dollars in hopes that they will bare a child. Then one day, they accept they will not.. they weep, they move on.. they decide to adopt and... poof... they are pregnant. How does that happen? Will I ever let go without a hidden agenda that like the couple... poof.. you will come back to me? Today.. Aydan.. you are 7.. someday son, you will be 16 but today you are 7 and we have work to do! This week in autism recovery looks like this: 1. Call the lawyer to get status on due process case with school 2. Continue with CEASE therapy, order remedies for new clears 3. Daily Aloe, Zinc, Vitamin C, Omegas, Whole food supplements 4. Order the Urine Toxic Elements Test 5. Massage on Wednesdays and Sundays 6. Epsom Salt bath nightly 7. No more eating with fingers 8. Resume walking everyday, preferably nature hikes 9. PRAYER Prayer.. I prayer for you.. I prayer for us.. I ask the God within us both to have the strength to rise to whatever this violent, unfair, joyous life has in store for us.. I cannot deny.. I cannot let go.. Is that denial a false sense of hope? Is that asking too much? Forget it.. forget it!! I want it.. I want you Aydan.. I want to know you.. I wanted it when you were in my belly.. I wanted it when the vaccine took you away.. I wanted it at 3.. I want it at 7.. and I imagine I will want it at 16.. at 65.. that is if you have not returned to me yet.. cause afterall, I'm not dying. This essay is also published on April’s blog at http://aydansrecovery.blogspot.com/, where she’s trying to raise $85 to pay for Aydan’s Urine Toxic Elements test. She are following up on chelation therapy to remove toxins safely. Any help is much appreciated—including prayers." http://gaia-health.com/gaia-blog/2012-06-19/is-it-denial-to-want-to-know-the-real-child-hidden-inside-an-autism-afflicted-body/

Friday, May 4, 2012

I want to help a family with autism but Autism Speaks sucks!! Now what?

Those of us in the Autism community are a bit worn about by the super giant blue monster known as Autism Speaks who somehow believes that by selling blue, mercury filled, CFL light bulbs will provide enough "awareness" to the public that it will cure autism. They've also made it clear that they have no intention of finding a cause by repeatedly ignoring the connection to autism and vaccines, while simultaneously teaming up with major pharmaceutical companies to find some sort of "cure" in a pill. To make matters worse, the Autism Society of America has been on another "awareness" campaign after the CDC's new conservative 1 in 88 children diagnosed with autism, touting their pharma friendly slogan.. '1 in 88 children "born" with autism'. Born? Please.. The fact is most regress between the ages of 18 months and 3 years, (give or take), the oldest I knew of was 8 years old... Yeah, I know.. does it get more horrible than that? Sadly it does. But some people still believe that vaccines don't cause autism and they're right.. except when they do. Not to say that vaccines are the only cause but the genetics argument has yet to pass the pepsi challenge. Still, I'm not trying to get into all that today. A lot of people want to know how to help families affected by autism and it's so hard to know where to begin when so many of these major orgs are huge sell outs. I always like to say, that if you want to help a family with autism the best way is.. to help a family with autism. There's no shortage.. sadly, so we aren't too hard to find. We need a lot of support, advocacy, understanding, kindness and we're broke broke broke.. not an exaggeration. Couples who have children with autism and seperate are left with an increased financial burden and even if the couple stays together it's nearly impossible for both parties to work full time jobs which in our indentured servitude makes it overwhelmingly difficult to make ends meet. Here's a brief run down of just some of the.. eh hem.. "hypothetical" extra expenses: $5000 a year on vitamin/mineral supplements, $1200-$2500 a year for homeopathic treament (consult only), $1200 per year for homeopathic remedies, $2500 a year for DAN doctor consults, $10,000 a year on additional non-covered autism therapies (that is if you're not paying for ABA treatment, otherwise it would be around $50,000); some families need to pay an attorney or legal advocate to help them deal with the school districts in order to insure appropriate treamtents for their child. These legal fees could run around $375 per hour, approximately $20,000 per lawsuit. So what do I have so far??? Conservatively it could be around $16,200.. but more realistically approximately $35,000; however, I've also heard as much as $100,000. And none of this includes the additional cost of water and/or air filters, improvements to home to address childs needs, additional food costs for nutritional senstivities and/or allergies, listening therapies or auditory training, brain gym, handwriting programs and on and on and on... Yeah.. and there's more. Having said all of the above, there are several NPO /Non-Profit organizations locally and nationally that are also more than worthy of your time and money. Some of which are tax deductible and I know none of us are among the 1 percent and need all the help we can get. I have my favorites which I'd like to share with all of you and no.. I'm not being paid to do so. First it depends on what you're interested in.. Is it prevention, research, education or organizations that provide direct service to families? You can find a lot of groups locally that probably do that, often colleges give low to no cost therapies and need money to pay the therapist, provide equipment and offer family scholarships. But just because I feel like it, here's my list of favs: Prevention: Groups interested in prevention are going to provide education, information and research on vaccines.. sorry if you still have your head in the clouds.. but thems the facts. -VaxTruth has excellent articles, provides education and empowers family by teaching them their rights regarding vaccine mandates and exemptions. Vaxtruth needs funding for it's billboard campaign across the country that reads "NO SHOTS, NO SCHOOL, NOT TRUE.." Genius! http://vaxtruth.org/ -Vaccine Resistance Movement provides information to help awaken the masses to their "inherent power" in the words of it's founder. It is also working on a worldwide autism study. For more information on that or VRM: http://study.vaccineresistancemovement.org/ -Vactruth has great articles and information. They provide free ebooks to those interested in learning more about what's in a vaccine. http://vactruth.com/ Biomedical intervention: I've talked to people in the health freedom movement who are often confused by this term. Those in the autism community; however, know exactly what it means. Autism is still given a very archaic diagnosis as a mental disorder and is not considered biological in anyway. When parent's of children say they are using "biomedical intervention" that does not generally mean mainstream medicine. It usually means they are working with a DAN or Defeat Autism Now practitioner who can be any type of doctor with spefic training to help work on the myriad of health problems associated with autism. Those include but are certainly not limited to yeast overgrowth/candida, gut dysbosis, inflammation, encephalitis, Lyme's disease, Heavy metal toxicity, nutritional deficiences, allergies, asthma, seizures.. etc etc.. Here's some organizations that I know from either personal experience or the experience of a friend that actually DO provide funding to families to pay for these types of interventions. -TACA / Talk About Curing Autism: TACA should go into the hall of fame of best autism organization of all times. It really should be in more than one category as it provides information, advocacy, recipes, tax information, local support groups, mentor programs.. the list goes on and on and on.. If you're newly diagnosed you will find that this is the best and possibly the only website you'll ever need to go to. TACA also provides scholarship programs to family's in need of assistance as well as those interested in seeing a DAN doctor. Definitely check it out, there's No one.. NO ONE.. like TACA. http://www.tacanow.org/ These other 3 are also very good, trusthworthy organizations that provide funding for biomedical programs to families in need. Generation Rescue and NAA are also big on advovacy and education. -Generation Rescue: http://www.generationrescue.org/ -National Autism Association: http://nationalautismassociation.org/ -ACT Today: http://act-today.org/ My Personal Favorite (Local Only) Organizations: -Pause4Kids: This group is very small and provides education and advocacy to families who need to understand special education laws. They give a montly support group, workshops and provide scholarships to fund a variety of requested therapies that might not be available through other funding sources. http://pause4kids.org/ -CSUN Music Therapy Program: Provides low cost music therapy and instruction to people with special needs by certified music therapists. In addition they offer scholarships to families in need making costs little to nothing. http://csunmusictherapy.org/index.htm -Ride On: This non-profit provides hippo (Greek for horse) therapy and therapeutic riding lessons for people with special needs. Like music therapy this is one of the oldest forms of therapeutic treamtent for the disabled. Horses were the original wheelchair and despite this fact both of these therapies are considered to be "alternative" and therefore are rarely funded by insurance companies, schools or other government funded programs. Keeping horses and staff to maintain horses is expensive but for many this intervention can provide tremendous relief. Through donations and fundraisers, Ride-on offers scholarships to familes for this invaluable but rather costly intervention. Parents, family members and older children can also volunteer their services in exchange for riding lessons and/or therapies. http://rideon.org/ Other Worthwhile Organizations: -Surfer's Healing: Surfer's healing is just great. They give people with autism regardless of ability or function level a free one day surf camp. Those who have participated in this often describe it as indescribably meaningful. If you watch the videos of these kids and don't get wet in the eye, I fear you are made of stone. http://surfershealing.org/ -Best Day Foundation: Like Surfer's healing this group provides people with special needs a free one day camp that involves water sports such as surfing, kayaking and boogie boarding. They also do a snow day given the time of year. http://www.bestdayfoundation.org/ Now.. I gotta say this felt good to write. It's not often that you get to express your gratitude to those who truely deserve it. Autism is a difficult road to travel, I don't care what anyone says.. It's hard. If it takes a village to raise a child than it takes a small country to raise a child with autism and most of us feel we are isolated and alone. This can sometimes be true.. though not entirely. There are people who care and really do want to help. It's important to thoroughly investigate the Non-profits you choose to invest into as many unfortunately are not exactly what they claim. One day I'll write a well researched long note about the corruption and otherwise bullshit that many.. okay probably most major non-profits are filled with but today I want to end on a positive. There are plenty of good guys out there, we just need to look for them. -http://www.ageofautism.com/2012/04/autism-society-of-america-billboard.html -http://vactruth.com/2011/06/17/83-reasons-to-question-autism-speaks-for-hiring-big-pharma-scientist/

Autism Envy!

I'm in the grocery store a couple days ago and my autistic son, Aydan now 7 years old is out of control. He's running up and down the aisles, pounding his hands all over the bread and runs up to a strange man who he pushes from behind. The man turns around as most people do when this happens with a look of disgust.. first at Aydan, then at me.. 'horrible mother.. that you are.. you should be ashamed..' all over their faces. Coming in at 62 pounds and 4'9", I am forced to put Aydan in the grocery cart, like a toddler in order to finish the shopping. As we're walking through another aisle, there is a child around 3 years old, also sitting in a cart filled with the average American diet.. processed cheese, Lucky Charms cereal.. She looks at me with full eye contact, a beautiful smile and says with perfect articulation, "hi.. how are you?", I respond, "fine, how are you?" Then she addresses Aydan, "how are you?" Aydan has no response, I ask Aydan if he would please say "hi" to the little girl, he responds... "ba..". See "ba.." is one of the only sounds he can utter... "ba" means whatever you want it to mean. It could be.. hi, bye, mommy.. whenever he is asked to speak.. he says "ba.." sometimes he says "pa.." sometimes he says "bye bye.." but that's about it. A couple weeks earlier the service coordinator from the Regional Center that provides in home therapy for Aydan's disability is in our home for an annual review. He decides this person is not welcome in our home.. he pinches her and when asked to stop begins to throw strawberries at her.. I guess it was a well communicated desire, be it unacceptable but understood nevertheless. Case worker says, clearly he's not improving very much and needs a new, more intensive intervention perhaps.. okay.. "What level is he?" she asks. "What do you mean, level?" I reply. "In school.. what level is he in school?" Oh.. "he's in the first grade." "No.. I mean what's his level?" "He functions at the level of a 2 year old, does that answer your question?" There is no level. "Oh.." is the only thing she can think to say. When Aydan was first diagnosed I used to love hearing stories of autism recovery. It would sit in my memory file under "something to try." This child recovered using this.. file that one under "reinvestigate in a year"... this child recovered using that... file under "too expensive but in desperation reconsider".. a child recovered from this after being very severe, file under "do whatever you can to get that started immediately." Today.. 4 1/2 years later, little has changed except for Aydan's age and size. I now have a very different feeling when I hear those stories, something along the lines of what you might think when you hear about someone who won the trillion dollar lottery. You aren't mad at the person, you don't want to take it away from them but you maybe disconnected from it, as if it's something that only happens to other people.. you might even wonder why that is. I get a lot of advice.. people tell me to try this or that or the other.. usually it's already been tried.. sometimes it hasn't.. sometimes it's helpful.. sometimes I can't afford it.. sometimes it's unrealistic.. and on and on... There's never a shortage of things to keep in the memory file. You see, it isn't that I want to take the lottery winnings away from someone else.. it isn't that I wish I had a trillion dollars.. it isn't that I want the little girl at the grocery store to say only "ba.." but it would be nice if when asked I could say, "yes, Aydan's at this level.." "Well, he's in the first grade but just started to draw.. or color.. or hold a fuckin' pencil.." It's that I want a LEVEL! It isn't pretty and maybe I'm bitter and maybe I'm a hater and maybe I don't deserve it but it's what I want and I can no longer fake it. I can't pretend that I don't want to hear the stories.. I WANT A FUCKIN' CURE!! Where's the cure? Don't tell me, it' isn't going to be easy.. I ALREADY KNOW IT ISN'T EASY!! Does anyone think this has been easy? Oh.. I know, I'm blessed.. because it could've been this or that.. but this wasn't divine intervention, it wasn't God's way, it wasn't random and chance.. it was a vial of poison injected into my toddler son... and that is where he has stayed... THAT is his level. Do I sound hateful or angry or bitter?? I'm not proud of feeling this way.. I'm not proud that I no longer want to be around my friends with kids because even my friends with autistic children have managed to reach some level of recovery... it hasn't been easy for them.. I know. I know they've earned and struggled and fought tooth and nail.. but so have we. I feel at some point this is no longer acceptable to talk about.. at what point do I go from being sympathetic to annoying to just plain "get over yourself". I don't know.. maybe I'm already there. I once wrote this monologue in college about a person who has a nervous break down while sitting in a traffic jam. She described being in a hot car with no air coniditioner, no radio, broken windows.. all she could see was cars.. cars on top of cars on top of cars on top of cars on top cars... as her voice lifted she began to shout "and I am liKE THE CARS.. NOT MOVING.. NOT GOING.. NOTHING BUT CARS ON TOP OF CARS ON TOP OF CARS..." Now imagine you have been sitting in that car for nearly 5 years. Do you still want to judge me for being bitter? And please don't think I'm giving up.. I don't want to give up.. I would never give up.. is that really even an option? How does one even consider that in this situation? Give up how? Go where? Leave it all behind and live in Parisian commune? Does that even exist? No.. of course that isn't what's happening here. I will always reach back into the memory files and say "what about this?" But I can't help but to think every now and then about these past 5 years and feel pain for their loss. I keep praying and hoping and plotting and deciding and working my ass off.. to get out of this hot car and it will always be that way.. that is.. until.. we finally get out. Wouldn't you do the same?