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.

I Don't Want You To Fix My Child!

What if someone told you they wish they could fix your autistic child?

Fix... as in the act of making something that is broken repaired.

Am I being too sensitive?

I do not see my child as broken.

Challenged? Yes, but certainly not broken.

And then in the same conversation this person said, “…but she sure is beautiful.”

Beautiful… as in having great qualities that gives great pleasure or satisfaction to see, hear, and think about.

Am I the only who sees the paradox?

I do not see my child’s beauty as a compensation for her challenges.

Yes, she is beautiful, but more importantly….

…My daughter is Sahara Grace; She is whole, vibrant, and a perfect expression of herself!!

Exceptional Beyond Labels… One Year After the Autism Diagnosis

It is a quiet Halloween morning…. As I sit here, I reflect on how today marks the one year anniversary of Sahara’s formal diagnosis of Autism Spectrum Disorder. Although I thought this would be an emotionally charged day, I feel quite content… and even optimistic.

SAHARA...

When Sahara was 5 months old, like many others on the autism journey, we suspected a hearing loss. The pediatrician nonchalantly dismissed our concerns, but there was always this nagging maternal instinct that something was not right. When we inquired about her speech delay at age 3 the doctor told us and I quote, “…some kids just don’t talk until they are 6.”

After another year of begging professionals to listen to us that something was wrong with our daughter, someone finally listened!! That opened up the door to many, many tests and procedures. She was formally diagnosed with autism spectrum disorder; which prompted even more medical tests. We found that there was little hope for recovery in the western model. In fact, one medical professional told us that she would never get married, go to college, or live independently… she suggested institutionalization. I decided in that moment to prove that professional wrong and became an advocate for my daughter.

We have explored many traditional and non-traditional modalities as we addressed her speech, social, sensory, fine / gross motor, dietary, sleep and cognitive delays. As we track our results, we see many successes and accomplished milestones. Being personally touched by autism has created an empowerment in my inner core. I dedicated my professional life to serving children and helping others in the mental health and alternative health system before this journey… I find it interesting that these collective experiences were cultivating a unique perspective that would be cornerstone to my daughter’s functional expression of life.

It has been exactly one year today since we uttered the word, “autism” in connection with Sahara. As I reflect about the progress we have made, I am reminded of a little 4 year old girl that was once catatonic, nonverbal, isolated in her own world, non-interactive, anti-social, clumsy, stemming vocally, spinning, eating only a few foods, exhausted from irregular sleep patterns, wearing diapers and having tantrums because of fundamental frustrations and sensitivities. That little girl has blossomed into a 5 year old expression of life… yes, my daughter will always see life through different colored lenses, but now we can see that she is exceptional beyond this label... and we are working on a life of independence and fulfillment.

As we continue to develop tools for her to function, we see that she can and will live the life of purpose while her parents hold as of high aspirations for her as her older sister. I even reckon it would be a hoot if Emily and Sahara became Paleontologists working side by side— like they do in their imaginative play together. And yes, maybe a husband, children and we can throw a white picket fence into the mix of possibilities!!

We have come a very long way in just 12 months. …And now as I look at this exceptional child beyond the label of autism, I realize that we have a lifetime commitment to supporting her on the spectrum, but we are dissolving the negative connotations that come with a label. She is Sahara Grace, not autism. 

I recognize that there is much controversy about whether or not you can cure a child of autism… I am not going to go into my perspective on that. However, I will say that Reiki and adjunctive services have started alleviating some of the major issues in this sensitive child. Daily her vocabulary grows. Yes, she still uses echolalia... but at least now we know she is capable of developing speech. Slowly it is emerging. We are seeing evidence of her yearning to interact with others appropriately, and is entering our world more and more. I am amazed how much progress we have made in just one small year!! Regardless of her level of function I will always accept her for who she is just like a parent of a nuero-typical child would. But, each milestone comes with a special joyful celebration.

How Well Do You Know Me?

So, I was recently told by a friend that I don't share much on face book, my blog or twitter about who SUSAN really is... Yes, we know your political and autism stance, but who is Susan? My response was that that was a calculated move... But in order to appease this person here is a simple trivia question....

I am sitting the waiting room with 3 other moms at Children's Hospital this morning. Each of us have a child in the social skills group. After 10 minutes of agonizing silence one Mom breaks the silence. Can you figure out which mom is me...

Mom #1: Is talking about the H1N1 vaccine. She is telling anyone that will listen that she is not going to get her kids vaccinated for it. She goes on to ramble about childhood vaccinations in general and how the whole concept just doesn't 'sit easy' with her, besides we all had chicken pox as a child and we are fine....

Mom #2: Is saying yeah, but... our kids are here in a hospital 3-4 times a week with lots of germ exposure (hospitals have more germs than any other public facility) and they are in school now around other kids with yet more germs. Plus if you get the shot you won't get the flu as bad if you hadn't taken it...

Mom #3: Is quietly texting on her cell phone, not daring to enter the debate. Probably texting her husband about the crazy mothers in the lobby today....

Mom #4: Is debating in her head whether or not she should dare chime in or not. By the time she mentions the getting sick actually strengthens the immune system, the conversation abruptly changes to giving childbirth....


Which mom am I... Mom #1,2,3, or 4?

Inquiring Moms Question: Is 10 Years Old Too Young To Start Shaving?

My daughter is beginning to bloom out of her Tomboyish persona into a developing Tween. When we went school shopping this year she demonstrated how true this was... she was bopping to the music in the teen stores and modeling feminine outfits with confidence. This is a new side to her that I think is quite frankly freaking her father out, but I am excited to see her bloom into her own essence. So, during our girls outing, we carefully selected a few short sleeve shirts and cute, yet comfortable skirts for school…

Here lies the question: She has obvious hair under her armpits and on her legs. She is only 10! At what age do you teach your daughter how to shave?

I put the question out there to other moms and this is what they had to say:

10% - Said it depended on the coloration of the hair. If the hair was dark… yes, teach her to shave now. If the hair was light, you just bought her (and you) some time.

10% - Said take the daughter’s lead. If she is talking about it, it is probably time to pull out that pink razor. If she isn’t aware of it, don’t make a big fuss about it.

20% - Said that it depends on the emotional maturation of the individual tween; explain to her the consequences of her actions. The novelty will wear off within a few weeks and then you will have no choice versus risking the brutal taunting of your peers. Way out the consequences together then let her decide.

60% - Absolutely do it now, before the teasing begins or before she hacks herself. Remember those cuts you got when your mom didn’t let you shave when you really really wanted to?

Although, the majority thought it was urgent that we embark on the task of shaving, I went with the 20% margin… We sat down and had a heart to heart discussion about the natural consequences of both options. After we talked about it, she looked me square in the eye and said, “I will wait!”

I met her decision with respect…. But, explained that if she were to change her mind at ANY TIME that she should let me know so I could teach her the proper way to shave… (I still cringe at the thought of the gashes I had way back when).

In the mean time, I am going to head over to the local library and look up a few books a twitter-mom recommended on early puberty and developing.

Early Puberty in Girls

Care and Keeping of You

Here's Lily

The Body Book