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.

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Jenny McCarthy Offers Hope To Mothers: Part 2!

I wrote a post about Jenny McCarthy offering hope to some mothers a couple of months ago... Yes, I understand that was risky. You either love her or hate her, right?

Well, it turns out, some thought that opened me up to a debate on vaccinations. The post really wasn't supposed to be about vaccinations... it was about hope, hope that so many in the anti-Jenny camp rape mothers of. Hope that our children CAN function normally...

I understand, our kids will always see the world through different colored glasses, but they can function with proper support and unconditional love. This is the hope I want to instill in others... unlike, the hope that the diagnosing psychologist offered us by telling us our daughter would never have a meaningful relationship, work or live independently... if we didn't do her ABA program!

This post was about the hope Jenny offers. The strength she emits to some. It was to defend a fellow mother who has been criticized for 'speaking outside the box'. My most recent critic responded, "There is NO evidence to indicate that vaccinations cause autism. http://tinyurl.com/ylbnrpc Think critically. http://tinyurl.com/cxnbvv"

Well, I go could go on for a really long time about both of those statements, but this sums up my reaction:

I do think critically -- about a system that deems it perfectly safe to inject mercury into a pregnant woman, yet tell her not to eat tuna fish.

I think critically -- about a system that refuses 3rd party unbiased research.

I think critically -- about the people sitting behind a computer making these comments... I wonder who is paying them.

I think critically -- about the systems (including doctors who chelate) that are taking advantage of desperate mothers and families.

I think critically -- about how there is only one industry that the government says, "Hey, if your product injures or kills a child or baby... don't worry, we have your back. You are not responsible."

I think critically -- about the elephant in the middle of America's pestilence among it's children; and wonder why we continue to tip-toe around and defend it.

I think critically -- about much and often!!

Most importantly, I think critically -- about each calculated move I make in addressing my child's symptomatology (which happens to mimic mercury poisoning- but we won't go there [today]). I think critically about the cost of her traditional and non-traditional treatment, her education, her dietary needs, her spiritual needs, her emotional needs, cognitive needs, physical needs...

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Jenny McCarthy Offers Hope To Mothers!

Have you noticed that people either love Jenny McCarthy or hate her? Frankly, I didn’t know who Jenny McCarthy was until a friend suggested I Google her after she saw my daughter spinning and avoiding social contact more than 3 years ago. (At that point in our life we were still in denial; how dare she suggest my perfect daughter have autism!!)

It was a few days later when I finally asked my husband if he had heard of her. Of course he had… but it was from her MTV days and the description of that Jenny McCarthy certainly didn’t describe the woman my friend suggested I look up. I put it behind me and we continued on with our life.

My friend kept passively implying that Sahara had many characteristics of autism. I was seriously annoyed that this person has obviously reading into the many traits that were “just Sahara” to us. This feeling was only confirmed when the pediatrician said, “some kids just don’t talk until they are six years old... they just have delayed speech. She seems fine to me. Come back in six months.”

I do admit I had a nagging feeling that something was wrong. (This feeling began when I was pregnant with her... I chalked it up as typical fear that an expectant mother experiences.) It wouldn’t be until she was 3 ½ that we finally yielded to this maternal feeling to have her tested at the Public City School’s Special Needs Preschool. At the IEP meeting, I hit a brick wall. How could I have not seen any of this? She had delays in everything… socially, physically, cognitively, fine motor, gross motor…! I think I cried for 2 days straight, then pulled MY big girl panties up and became proactive. I knew it could be easy to fall into a poor me attitude and lose more precious time or advocate for my child!

I have to admit that it would be another 9 months before her formal diagnosis. That was the second time I felt like I hit a break wall. However, this time instead of grieving I went to the library and got Jenny’s book, Louder than Words. I read it in less than a day…I kept reading passages out loud to my husband, who, honestly, seemed annoyed by my correlating our daughter to Jenny’s son. However, I shamefully admit that I felt relief that we didn’t experience the medical conditions Jenny described.

Louder than Words allowed hope to trickle in my essence for the first time since the beginning of our autism journey. If anything at all, Louder than Words gave me hope that I didn’t have to accept what the Psychologist reported to us, “most of these kids grow up not being able to live independently, don't have productive jobs, or participate in a intimate relationship including friendships.” Honestly, this statement is what fueled my fire. In the beginning I was out to prove her wrong, and then I found Jenny saying that this attitude was wrong…

...HOPE...

I am not saying I believe everything the DAN Doctors, Jenny McCarthy, or other biomedical supporters say, but I am saying that to stomp out any ounce of hope in a parent is wrong. I have had medical professionals tell me that if you followed biomedical treatments, like chelation, you are putting your child at risk for death. I have read statements from the medical community and from parents that debunk Jenny McCarthy based on her “play boy” history and inability to act. Really?!?! How can we base the validity of her claims based on her professional career?

I don’t care how bad of an actress she is in your opinion— there is no correlation between that and her ability to spread the word about vaccination safety and autism. The only button this pushes in me is that no one is talking about the vaccines containing thimerosal that are given to expectant mothers. I once had a nuerologist suggest our daughter's condition proved that there is no vaccination/autism connection because she isn't vaccinated.... what about the two shots of RhoGam I recieved during her pregnancy?!?!

Could that be why during her pregnancy I had this uneasy feeling something was wrong? Or why she would not make eye contact while nursing during infancy? Or why she slept for unusually long periods of times after birth? What about her 5 month old picture that she has Down's Syndrome features? That the geneticist and neurologist couldn't find a biological reason for the autism?

Another mom on Twitter once said that people like Jenny, who are focused on cures, are instilling false hope upon mothers who are more worried about staying status quo.... She implied that we need to except out plight and cope with it. I rebuke that! Hope is what a mother with a child with autism most certainly needs, hope is what Jenny McCarthy and the biomedical field offers. Hope is what allows us to sleep a few minutes each night.

Sadly, I may not be able to afford all of the modalities Jenny has provided for Evan, but I can give my child hope for a brighter tomorrow on the other side of the spectrum. It is not whether or not Jenny McCarthy is a good actress, a playboy or in a relationship with Jim Carrey— It is about a mother whose journey is touching the lives of a nation facing a pestilence among our youth. And if for a moment, you can be inspired that your child may lead a productive healthy life, then by God, let the woman inspire you and speak for the thousands of children who cannot.

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