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.