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Where Our Journey Began

February 19, 2019
by Becky Ferrigno

Where Our Journey Began

I have been writing about our family’s experience with Sensory Processing Disorder and anxiety for several years now. This work has become a large part of my mission as an author.  My writing has served as therapy for me, research, and a chance to share what I know with others traveling a similar route.  It has also taught me many things.

I have learned that my family is not alone.  In the beginning, I wrote so people would understand why I was so tired, so frazzled and unbending in my structure. Secretly, I hoped that someone would respond with a “me too.” Along the way sharing our story has helped me process our family’s experience and not feel so lost.

All of those things have happened.

An acquaintance who read my post turned me onto network spinal analysis chiropractic care. Another helped me find Autism Up, an amazing organization based in Webster, NY. Others connected me to advocacy agencies and the incredible knowledge base available with a single phone call. Not to mention the other mothers of kids with Sensory Processing Disorder and anxiety needs who have appeared to really listen. Their support, sage advice and ability to understand without judgment has been life-affirming. But more importantly, by speaking my truth, I have been able to help others. I have been able to guide mothers’ less far along on their journies. I have been able to others feel a little less alone, a little less scared and a little less frustrated.

How Did I know Something Was Wrong?

On a semi-regular basis, friends, acquaintances, and friends of friends call me. Usually, they are just beginning this journey and are worried, overwhelmed and often defeated. They all ask the same question- how did you know what was wrong. I always answer honestly, I knew something was wrong but I didn’t know what was wrong. Every time we uncovered another problem I thought, “This has to be it. We have to be at the root cause.” I haven’t been right yet.

Our story is complicated. It involves over a dozen medical disciplines and enough money to finance several trips to Disney. It is wrought with tears, disappointments and impossible decisions. But it has also been rich with self-discovery, the development of life long friendships and incredible joy. In many ways, our story is no different than that of any family with special needs but in others, it is vastly different.

We are fortunate. When our daughter was born, I had over a decade of teaching under my belt. I had spent hours in IEP meetings listening and learning. I had a network of friends in the special education community who were willing to give their honest opinion and support. We were blessed to stumble into a relationship with a pediatrician we adore and who always thinks outside of the box. But most importantly, we had enough money to pursue all therapy options and happen to live 15 minutes from a research hospital.

We are lucky. And luck, along with resilience, play huge roles in our story. 

Hindsight, Foresight’s Less Helpful Sister

After almost six years of navigating this crazy world of special needs, I now realize our journey started when I was pregnant. Our daughter never rested the entire pregnancy. She drove doctors nuts because she refused to stay still long enough for the doppler to register her heartbeat.

Our real problems began within the first month. She would not sleep, spit up constantly and could not gain enough to even get back to her birth weight. We were doing everything right: breastfeeding, giving her supplements with a syringe, and feeding her every 2 hours. My husband took videos of her spitting the formula right back at us. Facebook thought they were hilarious. In hindsight, we should have taken that as a sign but we were new to this whole parenting thing and didn’t know to dig deeper.

Fast forward to 15 months and new concerns began to crop up. She wouldn’t let anyone hug her. She cried when new people made eye contact. On top of all of this, our little one pulled her hair out in fistfuls at mealtimes and refused to eat more than a bite or two of food at a time.

Where Do You Begin When You Don’t Know Your Destination?

After a particularly depressing doctor’s appointment, our pediatrician decided we needed help. She sent us to the GI doctor and a dietician. The dietician was extremely helpful. The GI was not. We spent a tremendous amount of money and had nothing to show for it but the expert opinion that our child was being stubborn and would grow out of her GI issues.

In a moment of utter frustration, I unloaded all that was happening on our pediatrician. She looked at my husband, knowing his health history, and suggested we completely remove all milk products from our daughter’s diet.  Desperate for answers we did as we were told.

Within weeks we were looking at a new child. She took her hands away from her hair and she began to eat with relish. She smiled and laughed. For the first time, my highly articulate child had a word for hunger. She knew what hungry felt like and could ask for food. The days of screaming, hitting and sobbing hunger meltdowns were gone. We fed her anything she wanted and for the first time in her life, she began to thrive.

Brian and I looked at each other and thought, “We’ve done it. Things will finally get better now. We have solved the problem.

 

If only we had known that by uncovering the milk intolerance, we had made way for the real work to begin.

 

Here’s the rest of the story. https://www.beckyferrigno.com/where-our-journey-began-part-2/

 

You are never alone. Reach out if you need to talk.

~Becky

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