My Morning Rant

I was on Facebook this morning and started to write a morning greeting in response to a post by a local autism center,"

"The latest British Medical Journal paper about autism and vaccines, which provides evidence that the initial report linking autism and vaccines was fraudulent, and the media coverage that ensued, miss an important point…"

...and since my thoughts wouldn't fit the character limit... I brought it here.

Firstly, I was stunned to see an autism school post something so controversial. I do think their job should be education, intervention and advocacy... and that their opinions about the autism/vaccinate debate should be removed from their public statements. (... So I thought that this post was risky.)

But, they are right about questioning the media's coverage ... because, of course, we know that the media is a great place to get unbiased information!!

Secondly, (here I go…) I think Wakefield is a scapegoat!! (Do you know he had nothing to do with our pre-autism decision not to vaccinate?) Yes, that is right we made this decision before autism was in our lives... And in case you are thinking, “See, you didn’t vaccinate and your child still has autism!” Let me clarify, that doesn't 'prove' anything... I often wonder why no one is researching maternal vaccine history... For instance, RhoGam ??

I know too many parents who have reported regressive autism, not to question it’s etiology. I do not think autism is ‘caused’ just by vaccines, and in some cases… that is precisely what I think. But, I also think genetics, environmental toxins take a role as well…

Moving on to what Really pushed my buttons… this particular post went on to quote Autism Speaks,

"Until science discovers the causes of autism and explains its dramatic increase, parents will continue to reach their own conclusions and desperately try a wide range of treatments, whether there is evidence to support them or not. The answer is not to look to the past and look for blame, but rather to look to the future. We need increased research financing directed toward rigorous science that can provide the answers that parents are looking for and deserve. Until this happens, we will continue to wallow in controversy, and people with autism and families will continue to struggle with autism on their own."

Geraldine Dawson

Chief Science Officer, Autism Speaks

New York, Jan. 13, 2011

Editorial in New York TImes by the Chief Science Officer of Autism Speaks

Let me be clear Autism Speaks does not speak for myself OR my child! I have many questions, but mostly where is all this money they raise??? ... and why (or how) should we take YOUR research seriously while you are insulting parents across the world with statements like this... how can we expect unbiased research ? We can't!

In this statement you are indirectly (no, directly) are asking for more money to fund research?? Does anyone else see this statement as exploitation?? In the first two sentences, parental desperation is address… then whap… they put their hand out!

What about the 6 digits your executives are making? Do you know many autism families have lost their homes, have gone down to one income, and are scrapping by to do what they can with what they have for their children while you sit in your fancy upstate New York office getting rich off of us?

I don't need Autism Speaks to tell me that my child is 'broken' or that my marriage is going to end in divorce or that autism is entity stalking my family... I have found a way past her label, the stereotypes, the fears... but that doesn't mean I sit back and quietly listen to this crap... stop exploiting our kids, adult friends and loved ones.

Stop paying your executives 6 digits! Stop spending more ((a lot more)) on travel and office expenses than what you contribute to autism research and family services. Then maybe you don't have to recruit parents on the front line to go out to collect donations and walk... when they should be focusing their attention on their child.

Finally, take the dollar sign of my child's head!!

Let me conclude with this thought...

Whether you believe vaccinations is the trigger for your loved one's autism or whether you embrace nuero-diversity... let's unite to empower the global autism community. It doesn't have to be a heated debate of one side vs the other.

In fact, I have found common ground with both sides. I do believe pre-natal vaccines contributed to my child's condition, but I also accept that she is phenomenal.. autism or not. I will continue to support her and offer her the tools she needs to reduce her challenges. I have found blessings disguised as autism...

But, autism doesn't define who she is... she is Sahara Grace, a fantastic 6 year old exploding with possibilities.

As for Autism Speaks... shame on you for exploiting our community.

Read More

AWN: Crucial support to women, teens, girls and families on the autism spectrum

The Autism Women’s Network (AWN) offers crucial support to women, teens, girls and families on the autism spectrum... please take a moment today to read this and take action to let them know that not only does the autism community appreciate their efforts, but so do others.

For the past several months I have posted a link on my Facebook and Twitter page daily for the The Autism Women’s Network’s chance to win a $50,000 grant to help females on the autism spectrum in the Pepsi Refresh Project...

While this is a very important cause to me, I am sure that it is probable that many of my mainstream friends roll their eye as I continue to ask for their support! It is even likely that many will be relieved to hear this will be the last month that AWN will enter this contest.

Over the past few months, by participating in the self-driven need to promote this project, I have been warmly accepted as a mother representing her non-verbal six year old daughter among this community of self-advocates. As my interest in this project strengthened so did my report with several of the women from AWN.

I discuss why I value this project (HERE) and (HERE).

In short, I have a daughter on the spectrum that was not diagnosed until after years of pleading with professionals to listen. (I am certain that her gender played a role in the lack of attention to our continuous concerns.) I also recognize that females are underserved and represented in the presentation of the spectrum.

It isn’t that I ignore male issues on the autism spectrum; I just have a vested interest in female issues because that is my reality. My goal in supporting Autism Women’s Network is simple:

To get the support my children and I need on a personal level. And to globally help girls, teens and adult women (and their families) to get the support and education they need, to prevent abuse, and to promote early intervention for females.

So, how will this project help?

Project Overview:

The Autism Women's Network is unique in that it was founded by women on the autism spectrum. Our mission is to provide effective supports to autistic females of all ages through a sense of community, advocacy, and resources. AWN's Project FAIM ( F emale A utistic I nsight M entoring) workshops will be the 1st of its kind. We plan to set up 5 Project FAIM Workshops across the USA which will focus on qualities specific to females on the autism spectrum. Topics will include: peer supports, adolescence, adult life, relationships, vulnerabilities and successful communications. Project FAIM Workshops will include active supports and information for everyone (autistics, parents, educators, etc.) The participants will meet renowned autistic females whereby gaining valuable insight. We will secure the Autism Women's Network non-profit status so we can continue to provide Community Events, online Forum support & E-Mentoring as well as our AWN Radio Show.

This has already begun to come into fruition through the Pepsi Campaign…

Sharon daVanport, AWN executive director, told me that, “This campaign has put AWN in contact with dozens of organizations, fabulous community minded projects and wonderful men, women and children from coast to coast across the USA.”

Isn’t that exciting!?!?! Imagine how this will impact our autism community as a whole!!

Not only that, AWN has received 9 invitations (including me) to host workshops across the US!! “Most of the invitations have included travel, lodging, and offers of a place to host the events! AWN has almost doubled the number of workshops which the Pepsi Grant would have provided.”

Can it get any better? Well, yes it can…

Sharon said, “The grant funds we were allocating to establish AWN as a non-profit will be minimized. We've had another 501 3C step up and say that they will back AWN through the process of filing all Federal, State, and trademark documents to finalize our non-profit if we do not finish December in the Top 10!”

So it appears that AWN will be winners (2x over) at the end of December whether or not we finish in the top 10!

There are three ways to support this project if you would like to vote for AWN…

VOTE Daily:
(1) On Facebook ☛ http://bit.ly/akQc0P?
(2) Text 101500 to Pepsi at (73774)
(3) Online at: ☛ http://pep.si/eg1mOG

Read More

Dr. Temple Grandin: Animal Behavior, The Autistic Brain and Inspiration!

Many people get excited about meeting their favorite rock star or movie star… not me, I wanted to meet a livestock behavior expert!!

You may ask, ‘Why on earth would Alterna-Mom, a mid-west special needs mom, be interested in livestock behavior?’. Well, I am not. And yet, ironically I completely am. See, Dr. Temple Grandin isn’t just the world’s most famous animal expert and livestock rights advocate, Dr. Grandin has also won the hearts of the global autism community through her self-advocacy and insights on how the autistic brain works. … yes, that is right a DOCTOR of animal science who has autism!! She unknowingly paved the way for many of us to see that our children and loved ones are exceptional beyond labels and can achieve anything they desire.

BUSTING MYTHS

Dr. Grandin was diagnosed at age 3 ½ with non-verbal autism (infantile schizophrenia). The doctors wanted to institutionalize her, because, frankly, that is all they knew how to do back then. In her generation, it was common to ship off the children that were ‘different’, however having an independent thinking and educated mother who saw potential when no one else did, Temple was given proper early intervention and support which has cultivated a drive within her like none I have seen. Temple is a confident, successful and witty business woman and autism/animal rights advocate.

Busting the myths of autism, Temple and her Mother, with sweat and tears, were able to give Temple the tools she needed to become all she is today:

"Dr Grandin obtained her B.A. at Franklin Pierce College, her M.S. in Animal Science at Arizona State University and her Ph.D in Animal Science from the University of Illinois in 1989. Today she teaches courses on livestock behavior and facility design at Colorado State University and consults with the livestock industry on animal welfare.

Dr. Grandin has appeared on television shows such as 20/20, 48 Hours, CNN Larry King Live, PrimeTime Live, the Today Show, and many shows in other countries. She has been featured in People Magazine, the New York Times, Forbes, U.S. News and World Report, Time Magazine, the New York Times book review, and Discover magazine. She has also authored over 400 articles in both scientific journals and livestock periodicals. Her books 'Animals in Translation' and 'Animals Make Us Human' were both on the New York Times best seller list. 'Animals Make Us Human' was also on the Canadian best seller list.

In 2010, Time Magazine named her one of the 100 most influential people." ~ Michele Gwynn

When a friend informed me that Dr. Temple Grandin, Ph. D. was coming to Ohio State University to talk about dog and horse behavior, I was determined to see her. This is my personal reaction to that evenings presentation.

LIVESTOCK, PUPPY MILLS AND ANIMAL BEHAVIOR

Dr. Grandin’s presentation on animal behavior was intriguing. Every insight she shared… seemed common sense. However, she diligently expressed that when we are in the moment of behavior issues with our pet and livestock it is hard to step aside and see the details that might be triggering the behavior. (Kind of like our kids, don’t’ you think? How many times do we find ourselves wondering, “That was so obvious, why didn’t I think of that?”)

The presentation covered the horror of Ohio being the Puppy Mill Capital of the United States (alarming!!) and that Ohio is 1 of 15 states where it is still legal to auction dogs (sad!!)… The take home message was this: DON’T BUY DOGS/PETS!! Go to a rescue or humane society to adopt… this will put puppy mills and breeders out of business. Aside the fact that we have too many dogs already in the world without homes, I couldn’t conceptualize why we purchase and purposely breed even more? This part of the night was shocking to me. The local groups that sponsored this event shared horror stories about puppy mills and breeding… I don’t want to share those raw details here, but it is down-right tragic and cruel!

Dr. Grandin talked about breeding and genetics. When we try to breed for the best and strongest genes/traits we also get unexpected discrepancies… the best way for me to summarize the ironic message here is that when we try to create superior breeds we end up with the weakest: physical and behavior issues are emerging at an all time high because of breeders interfering with and breeding for the best traits like blue eyes and fertility. Dr. Grandin says that if you want a fancy breed of dog… for instance the Golden-Doodle… Firstly, only get one from someone that can present the mother to you… if the mother isn’t present, don’t get the dog. Secondly, make sure it is a first generation Golden-Doodle… with one parent being a Poodle and the other a Golden Retriever.

The last take home message on this topic was too “test drive before you buy” so to speak. Just because some kids have had success with pets, doesn’t mean all will. Make sure the pet is a good match for child as well as the pet.

THE AUTISTIC BRAIN AND ENABLING

Dr. Grandin has raised the bar with animal care in the livestock industry and she has studied the behavior of animals most of her life. More amazingly, she has been able to give us a peep into the mind of an autistic. This has given Dr. Grandin the rare opportunity to educate the world about the similarity between thought patterns of autistics and animals.

Of course, I was pleased to hear Dr. Grandin talk about this topic (after all that was the main reason I wanted to come to this event). She talked about the autistic mind thinking in pictures and how the autistic mind, similar to an animal’s, categorizes everything. Her insights have helped me to understand my children better and left my tween walking away saying… you know that is how my brain works too. This opened the door to a fantastic conversation about the aspie traits we recognize within her and how this doesn’t change her core.

Dr. Grandin talked about how children today are not ‘pushed’ like she was. And although we have more supports and interventions than ever before, the parents and other significant others in the child’s life today, enable them use their condition as an excuse to not have responsibility and goals. She says that as long as a child can talk, make them talk for themselves. Make them get up at a descent hour and have a productive day. Make them accountable for all they do. Give them opportunities to cultivate the desires, interests and dreams. Don’t use the label “autism” for an excuse.

She further illustrated this point by acknowledging that as a child she loved going to the beach and letting sand drip through her hands… this simple, almost hypnotizing action, focused and soothed her (sound familiar?). However, she stated that if that was all she was allowed to do, then she wouldn’t have been giving the opportunities, skills and determination that lead her to the events in her life that brought her on the stage talking to us that evening. Because her mother pushed her beyond the stimming, she was able to become the successful woman that she is today.

TECHNOLOGY & SERENDIPITY

At one point, Dr. Grandin told several aspies in the audience to use the power of “Google” to open avenues for their own hopes and dreams… she said today’s generation have it very easy in comparison to the what it took her to accomplish her goals. Dr. Grandin said that with all the technology we have today (and gave credit to all the aspies who made THAT possible) that anyone anywhere could open doors easily. She referenced what I term as ‘serendipity’. She said to go out and meet people on social networking sites and present your own work and portfolio. She was adamant that if you met the right person doors would open for you…

(Side bar plug: So, I hope an editor or publishing house sees my blog/writing and someday picks me up… )

Speaking of plugs, Dr. Grandin talked about her HBO movie, Temple Grandin. I loved her enthusiasm and the beam in her eye when she relayed that every fact presented in the movie was accurate; if you want to know how an autistic mind thinks, watch her movie; if you want to know how a cattle chute or livestock yard is run, watch her movie; if you want to know her life story up until she was 30, watch her movie… I believe from observing her body language and the enthusiasm in her voice that she is very proud of not only this movie, but having had a hand in the making of it.

Another thing Temple was vocal about was her drawings. She adamantly stated that it took her 3 years of practice to draw cattle chutes in the manner that she can. And that the drawing in the boardroom during the movie, is an actual drawing of her’s.

CURE VS. RECOVERY

One mom in the audience even thanked her for the insight and inspiration that she offers so many of us! There were several apsies in the audience, one in which asked her about organizations like Autism Speaks. Dr. Grandin didn’t directly answer the question, but instead gave a 5 minute impromptu lecture against the curing of autism spectrum disorders.

She ended the mini lecture with 2 points:

1) If you cured every person who had autistic traits, we would no longer have any scientists or computer geeks to advance our world.

2) If you cured a person of their autistic traits, you would take a component of who they are at the core of their being away.

I have thought a lot about this point over the past 6 years. I do not want to cure my child of the unique abilities and attributes that make her her, but I do aim to soften the challenges that make life difficult. I want to address her functional expressive and receptive communication skills, her dietary needs, her delayed motor skills, her sleep disorder, her raw frustrations, and to curb her inherent need to flee to protect her from bodily harm. (… this list could go on.) However, beneath these challenges, there is a core within her existence… a witty, funny, determined, moody, intelligent, confident little girl that without a doubt will use some of her autism attributes to define her persona and create an exceptional woman who can and will be able to accomplish anything she so desires.

DIFFERENT, NOT LESS

I imagine this is what Temple’s mother meant when she said, “different, not less.” And as I watched this magnificent woman on stage talk with us, I saw how she was different; her rigid body movement, her deliberate gestures & need to put her hands in her pockets at specific moments, her articulation of words, her ability to recite the lecture she certainly was reading from the pictorial memory within her brain, her obsessive passion for animals and the consistent ability to relate the animal behavior to that of the autism. But, I also saw this woman who had a charming sense of humor, a passion for her animal mates, a sense of confidence as she articulated her mastery of the subject at hand, a sense of pride about her artistic skills, and the desire and ability to engage with the audience. Most importantly, I saw a woman (whom I respect and adore) present herself with all her little quirks and nuances with an aura of being exceptional beyond the label of autism.

I am proud to have Dr. Temple Grandin be a role model for my young girls. She was everything I expected her to be and more.

Read More

MAMAPALOOZA COLUMBUS IS BECOMING THE BUZZ OF THE CITY

Mamapalooza Columbus is a branch of Mamapalooza Inc., a mom-owned and operated mother advocacy organization founded by Joy Rose of New York City. Mamapalooza Columbus is connecting local women, mothers and families through music, expressive arts, activism and education for cultural, economic and social awareness. This past May marks the fourth anniversary of Mamapalooza Columbus which has not only created a buzz, but inspired a Mamapalooza Committee of Coordinators, a Back to School Event and even one of the Mamas being showcased on Mamapalooza TV and the Museum of Motherhood.

Columbus, Ohio September, 2010 – Mamapalooza Inc.'s ongoing mission is to create authentic, inspirational, large-scale experiences that will reach millions. Mamapalooza Columbus is energetically helping this mission come to fruition.

It was Mamapalooza Columbus 2010 that inspired four Mothers to unite for the empowerment of the women, mothers and families of Columbus, Ohio. Eileen Clary (HandyGirl!) is leading this committee and is credited with starting the action in Columbus as the Regional Coordinator since 2006. Vanessa Abel (Earth Flutter), Joanie Calem (Sing Along and Dance Along) and Susan Richardson (Exceptional Beyond Labels) have joined Eileen as a Committee of Coordinators and have already begun the planning stages for a Back to School event this fall.

This Committee of Coordinators is hoping more mothers in the city of Columbus will join in the fun with innovative activities that impact the women, mothers and families of Columbus. If you have a product or service that focuses on creativity, fun, health, wellness, financial education, expressive arts or if you’re a Mom-preneur, Mamapalooza Columbus wants you to buzz in too!

Some of the other folks involved with Mamapalooza Columbus 2010 were Randi Mockensturm, Tenara & Candice, 7th House Moon, Majestic Belly Dancing, Elliot 12Trees, Leslie Zak, Nancy Miller/Scentsy, Cynthia Minnich/Clearartview, On The Spot Mobile Massage & Bodywork, Columbus Acupuncture & Wellness Center, and Global Gallery. Thank YOU for making Mamapalooza Columbus 2010 the buzz of the city!

Alexis Chapman, Independent Contractor for M.O.M. (Museum of Motherhood), came out to personally support Mamapalooza Columbus 2010. M.O.M. is a sister organization to Mamapalooza Inc., devoted to educating the world about the contributions of mothers both historically and in contemporary culture. Alexis connected with the Columbus mothers and stayed to enjoy some of the Moms that were rocking the stage! Later she connected with one of the committee coordinators, Susan Richardson, and asked her to be a guest blogger on M.O.M. and to be interviewed on Mamapalooza TV.

Mamapalooza Columbus looks forward to showcasing more mothers and connecting them with Mamapalooza Inc., Museum of Motherhood, Mamapalooza TV and other venues to bring the much needed awareness about the impact of mothers on our community. As Mamapalooza Columbus gains momentum and builds a buzz in the city, they will be looking for reciprocal sponsors to become involved as well as the perfect spot to hold Mamapalooza Columbus 2011 in May. For additional information on Mamapalooza Columbus, contact Eileen Clary at e_motok@yahoo.com. You can also get more information on Mamapalooza Inc. at www.Mamapalooza.com.

Read More

Unity Among the Autism Community

On the eve of April - Autism Awareness month, I feel compelled to get this off my chest. See I have been holding my tongue for some time and I absolutely cannot stand it anymore. The ‘infighting’ among the autism community grates at my inner core and I find myself needing to come forth in order to release the charged feelings I am experiencing ... I understand it may not do any good, but at least I will have said my peace.

At a time when autism numbers are soaring, we need the mainstream folk to become involved. And yet, our own community cannot support one another despite our differences … How, I ask, can we possibly expect others to take a stand and advocate for us, when we can’t do so for each other? It is time to set aside our differences and unite for the greater good of the autism community as a whole.

Our children (and adults) diagnosed with autism need support, protection, advocacy, and empowerment as well as other necessities.

Personally, dare I say, that I actually relate to both sides in my own unique way; the neuro-diveristy and the pro-cure. I don’t think that makes me hypocritical. I am just a concerned mindful mother wanting the best for her child.

The nuero-diversity camp promotes that we accept our differences and honor each person in their unique sense of self. Truthfully, that really is the foundation of my personal advocacy group, Exceptional Beyond Labels. I, also, believe that despite any label (autism, aspergers, pdd-nos, ect) that each person behind the label is just that… A PERSON! They are a person not defined by this label, but rather a person defined by their unique individualization... And that person is phenomenal and capable of anything given the proper tools. Autism is not something to be ashamed of, in fact, I believe it is those on the autism spectrum that will make profound changes in the systems that are no longer working in our world(but, that is a whole different blog entry). I believe that all research and programming and legislation should include parents and adults on the spectrum ... I agree that we cannot determine their future without their input!!

On the flip-side, I find myself praying for a cure and requesting unbiased 3^rd party research. I long for a day that the ‘infantile autism’ label that limits my child is shed like the skin on a snake. I am motivated to prove the diagnosing psychologist wrong when she said to us without a blink of an eye that our young daughter would never have a productive career, meaningful friendships, marriage, a college education or independent living. I have read countless books and surf the net to wee hours of the night to discover what others are doing to help their child diagnosed with autism to 'recover', so that I might be able to pull her further into our world closer to a functional life. I have tried diets, alternative therapies, holistic medicine, traditional therapies, and anything else that was within my arm’s reach. I want, like every parent, to have my child have a bright future full of possibilities.

I don’t do these things to change her core essence, but to remove barriers so that she can have a productive future; to improve her quality of life; to reduce her fundamental frustrations that are demonstrated through a profound expressive and receptive speech delay, an heightened autonomic nervous system response, the sensory and auditory processing complications, a curious eating disorder, awkward socialization skills.... let's not forget that I do this to end the never ending fear of her risk of elopement ending in a catastrophe or to end the nightmares about what will happen to her if her parents were to tragically die or to end the fear that resides in the knowing that if someone were to violate her she would not have the functional words to tell me (and the list goes on) …

I have come to understand that some cases of autism (possibly more aspergers than infantile autism) is genetically based and hereditary while other cases are more environmental. Our geneticist concluded there was no biological foundation for the autism, yet denied environmental possibilities. That doesn't make sense to me. How can biological and environmental factors both be ruled out? This is a hot topic and has caused some to even proclaim hatred towards a certain celebrity. However, I cannot rationalize for one second how the toxins in the vaccines could possibly be safe in the amounts given to the tiny bodies our child inhabit. Yes, I know that the CDC and FDA have cleared them to be safe but common sense tells me otherwise. (I am not going to elaborate on this as there are many resources out there stating the facts… go check them out). I, also, am concerned that no one is talking about maternal vaccine history and its effects on the offspring she bears or the Rho-Gam (Anti-D) vaccine given to pregnant women with negative blood. If the toxins cross the blood brain barrier during critical fetal nuero-development could that not affect the brain and cause autistic-like symptoms?

Now, I do believe that the camp that takes this stance should be less cynical and sarcastic in their presentation … tastefulness goes along way. I wonder if a certain publication ever considers that their point of view would be better accepted by mainstream, the autism community, government, and big-pharm if they added a little more class to their presentation. But, their opponents create face book pages like I Hate Jenny McCarthy. So, what do you do?

This has to stop. We have to have a truce!! We have to say we can understand both perspectives and respect the needs of both parties. We have to stop organizations getting rich off of the challenges our children and adult friends diagnosed with autism face. We have to unit for the common good for all involved regardless of etiology beliefs! We have to unite to promote advocacy, education, safety, insurance inclusion, 3^rd party research, affordable early intervention, awareness of alternative and holistic health modalities, resources on self-esteem building, education advocacy and inclusion, elimination of seclusion and restraint, as well as promote things like education for mainstream professionals like the police, firemen, teachers, store clerks, life guards, and public transit authorities.

We have to put aside our differences for the greater good of our community; a community desperate for answers and desperate for acceptance.

Read More