I am a mother of three unique and beautiful souls.  When my youngest was born, I identified very early on that he was likely autistic.  I worried endlessly.  Is he?  Isn’t he?  I watched, worried, and most importantly, waited for the medical professionals in the community to identify what I saw so clearly, and what they took years to ultimately diagnosis.  In this experience I learned a valuable lesson that early intervention doesn’t always mean early.  For practical purposes, Autism is a spectrum disorder that’s main characteristics are delays in development; and in order to display a delay you have to show you are lagging behind your peers.  Therefore, there is an inherent wait-and-see approach to determine if a child is slow within the spectrum of normal in displaying a skill, or if they are truly delayed and potentially autistic. 

 

My son was diagnosed as autistic shortly after his second birthday.  There were many system barriers that I encountered in the medical community prior to receiving this diagnosis.  I had to be more assertive than I preferred to be in order to be referred to a developmental pediatrician when he turned one.  Simultaneously, I completed developmental questionnaires that were sent off to the developmental screening department of my health insurance.  Both the developmental pediatrician and the developmental screening department told me that he didn’t meet a threshold for diagnosis or intervention.

 

I will be forever grateful to a speech therapist friend of mine that recommended having him evaluated through Alta Regional.  Speech, Occupational, and Child Development Specialists evaluated him and qualified him for services independent of my medical providers and independent of an autism diagnosis. 

 

My son received weekly speech, OT, and child development services beginning shortly after he turned one.  However, as time moved my anxiety grew.  I was well aware that without a formal autism diagnosis, a fine and gross motor skill delay was needed to continue OT and Child Development services.  My son was masterful with his body.  Climbing stairs independently, jumping onto skateboards with determination.  Gross and fine motor delays were no longer an issue.  That meant with re-evaluation we would lose services if he didn’t gain his autism diagnosis. 

 

I became focused on capturing the moments that supported his diagnosis.  My phone was in hand constantly and there was a period of time that I felt more like a documentarian than a mom as I rushed to record proof of his autism.  Every moment of glazed inattention, inability to respond to his name, inability to make intimate eye contact; every example of his toe and heel walking, the random items he would line up rather than functionally engage with, the way he would avoid engaging others as if they were objects in a room to walk around rather than bump into.  Every example of distress at foods as his palate became increasingly limited in variety, and his difficulty in transitioning or allowing for spontaneous play during social interactions. Outside of his obvious speech impairments in which he would gain an inarticulate word and then lose it shortly thereafter, mostly communicating through laughs or sounds of distress.

 

I captured them all.  I was determined that when he turned the magical age of two, I would once again request an appointment with the developmental pediatrician, and this time if necessary, press to be referred to the autism clinic for evaluation.  I couldn’t risk that his medical providers would once again dismiss me and his clear signs of autism.

 

By chance and fortuitous grace, they were all proved unnecessary.  My son was evaluated independent of my medical insurance, through the gold standard of professional Autism research and evaluation, the UC Davis Mind Institute.  They evaluated him, and finally, he received the diagnosis I had known was present since he was weeks old.

 

Whereas others might experience grief or loss, I felt tremendous relief. 

 

I wasn’t crazy.  I was concerned.  The moment of his diagnosis was validation for every moment spent in worry on his behalf.  The pregnant pause after they shared confirmation of his diagnosis and gave space for me to process was a confirming moment.  No tears were spent.  In many ways it was a relieving moment.

 

I could be a mom again.  I could live in the moment with my son, no longer needing to validate and record his symptoms.

 

I turned my attention to services, and with it, learned of the exhaustive experience of being evaluated over and again by different service providers and interviewing service providers for an appropriate intervention that matched my son’s needs.  If you’ve been there, you know.  What did he need?  Where was the fine balance between service needs and just being a kid? And what about me? How was I going to maintain working and being present for the hours of services each week?  I was overwhelmed and exhausted already and I was only doing three hours a week.  What would it be like if he needed ten, twenty hours, or more of therapy?  How could I continue to work?  I needed a different answer.

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I went down a rabbit hole of research.  How could I effect change at a biological level, passively, without forcing and focusing on hours of behavioral intervention?

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Insert, The Safe and Sound Protocol. Insert, Neurofeedback.  

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I found the Safe and Sound Protocol by accident.  I was attending a training on Polyvagal Theory when, almost as an afterthought the instructor discussed the listening therapy that had been developed to regulate the nervous system.  In fact, the technology had been studied with an autistic population. After reviewing the research, I moved forward with becoming trained.

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As for Neurofeedback, this was already known to me personally as a magical and life changing, or mood-changing I should say, intervention.  In the past, following a stubborn bout of depression, I had personally decided to try an alternative approach and had engaged a local neurofeedback provider.  I was pleasantly surprised at its effectiveness.

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My positive experience with Neurofeedback had always stayed with me. As I contemplated my son’s struggles, I wondered whether Neurofeedback could help him as it had done for me.  My research rabbit hole supported the possibility.  But my quest to find a neurofeedback provider for him was fruitless.  Finding a local provider in this specialty can be difficult, and finding one willing to work with a two-year-old proved impossible.

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How was it possible that in order to have early intervention, one had to wait?

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This spawned my expansive immersion into Neurofeedback.  My goal was simple, to be specialized enough to help my son.  In the process, I have realized the invaluable nature of being a safe space for young pediatric populations that others will not serve with a specialization that few have.

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I wish to be very clear.  I am not curing autism.  I am specifically focused on symptom reduction that ultimately increases the quality of life of those I work with.  Including my son.  He no longer toe or heel walks.  He no longer lines up toys and objects.  His eye contact has increased.  His rigidity and need to control social interactions has decreased.  This does not change that he is autistic.  It is my hope that it makes his autism more comfortable for him to experience.  In a world around him that changes swiftly and suddenly, I merely hope that he can experience it more peacefully.  That is my goal.  He continues to struggle with functional language, issues related to newness and change, and food.  Oh the food! But in general, he is a happy boy, giving affection to the select few he calls his own, and has the appearance of being less distressed.  Our Neurofeedback journey continues.

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I didn't strike out to become a Neurofeedback provider.  I'm quite happy in my specialization treating anxiety and trauma in adult populations.  However, I feel compelled to be the provider that I wished for when we were seeking early intervention. It is my opinion that Early Means Now. 

I aim to accomplish that goal.