Thursday, 25 March 2010

• One Year After the Autism Diagnosis: Exceptional Beyond Labels

  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.

  
  

  I wanted to save today to announce the opening of my energy practice— specializing in families on the autism spectrum, so I find it ironic that after a long search for the perfect place to work I will be solidifying my office space for Exceptional Beyond Labels this weekend… Never ignore those coincidences!! 
  

  However, as I reflect back to what brought me to this exciting place of inner strength and ability to reach out to others on the spectrum, I remember how in 1996, we drove home from my father’s funeral discussing the many injustices I had witnessed in my life journey so far; a flawed mental health, medical, and judicial system. I remember the cathartic fury I experienced that night— this raw shift in my perception ignited a drive towards personal optimal health and wellness; physically, nutritionally, emotionally, and spiritually. I do feel this was in preparation to a journey that was yet to come… 
  

  In 1998, we were delighted to prove a gynecologist wrong about my diagnosis of infertility with the pregnancy of our first daughter. Then, the OB told us we were miscarrying based on hormonal levels and advised to get a D&C; had we listened to him Emily would not be here today. This was the monumental moment which triggered us to become even more involved in the holistic health and attachment parenting movements…

  With this new perspective, we decided to not vaccinate before autism was in our lives. So when Sahara was born and presented immediate delays and oddities, we rejected the implications of autism. In fact, when we discussed the possibility of autism, we called it the “A” word... we couldn’t even say it out loud. As we progressed closer to the diagnosis, we made the connection that although she didn’t receive vaccines first hand, she did receive them second hand via RhoGam. I felt betrayed by a system that was supposed to help our children…

  (These 3 major life events have ignited a drive in me to educate and to empower others to make personal, mindful decisions in regards to their children.)

  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… I decided in that moment to prove that professional wrong and became an advocate for my daughter and eventually for others on a parallel journey.

  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 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, which I can now share with others.

  

  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. 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.

  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 exceptional beyond that label and is Sahara Grace, not autism. I no longer say my daughter has this or that, but rather she is diagnosed with autism. She is this incredible soul that has so much wisdom and life lessons to teach everyone whom enters her life.

  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 alleviated some of the major issues in this sensitive child and calmed the stressors within the family dynamic allowing for the true expression of life to come out. Daily her vocabulary grows, she yearns 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.

  My goal is to support my daughter in the development of a functional and productive future… while... having the freedom to offer my unique personal perspective on this system, compassion from experience and extensive knowledge about what you can do at home to support your own child to foster functional development and easing stressors.

  

  Preparing to share our insights with other mothers and fathers has created a higher purpose to the label of autism in our personal lives. If you know someone touched by autism, please share my information with them so that they too can become empowered and see that their child is exceptional beyond labels.

  

  Image Source Image Source Image Source Image Source

  • 9:30 PM
  • 596 Views
  • 4 eProps
  • 1 Comment