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?