Introducing Mary Romaniec
When Autism Becomes Your Life-Calling
My life calling is not one I would ever have chosen as a career following college. I am an advocate, writer, mentor, speaker and activist for families who have a child with autism. My path was chosen for me when my son was diagnosed with autism at 18 months. Our story is rife with the same pain and anguish that other families endure when their child was diagnosed. But what makes our story unique is that he went on to fully recover from autism, losing his medical diagnosis by the age of four.
It’s the in-between parts of 18 months and four that need to be illustrated here so that there is no misunderstanding. Daniel was first suspected of having autism at the age of 16 months when his physical therapist started noticing regression in his milestone development as well as a new sensory aversion to textures and sounds. The physical therapist was assigned to Daniel when he was seven months old and he was not able to lift his head. Both autism diagnoses were concluded by two neurologists from well known hospitals, as well as by three psychologists assigned to us by the local school district. When he lost his medical criteria for autism it was at the behest of his pediatrician who witnessed a minor miracle unfold before him . . .” I see no traces in this boy and it’s all due to your efforts, Mrs. Romaniec. I have never seen anything like this.”
Efforts. Sort of an understatement really. The efforts included long nights researching the latest information on anything and everything that might help me to help our son. It included attending conferences and seminars, speaking with leading experts and above all, listening to my own inner guidance for what I knew would be right for Daniel. It included getting on my knees in prayer too.
This pounding on the door mentality led to a chance to be seen by a leading immunologist who had been having success treating some children with autism with immunoglobulin, aka IVIG. To be a candidate the patient must possess certain immune deficiency markers, along with another marker to test how they responded to administered vaccines. Daniel qualified as a patient for IVIG, but to be sure that I had asked all of the right questions I asked my sister who is a virologist to come ask the pertinent questions and interpret the understanding of the medical language. It was her opinion that IVIG was a safe alternative for Daniel, especially considering how sick he had become (which is very true for most children with autism). The tough part was figuring out how to pay for it all, but that is my husband Richard’s acumen, and he made arrangements to ensure we were able to do whatever treatment Daniel needed (insurance does not cover any of this).
Within four infusions of IVIG (done monthly), Daniel went from being completely non-verbal to speaking full sentences. His attention during therapy sessions expanded to the point that he began to model and mimic typical behavior. The school district was astounded at the progress as were his early intervention therapists. By his 12th infusion the immunologist declared that he would recover from autism, and by the 18th infusion his pediatrician declared full recovery.
This is the part where my life calling comes in. One of Daniel’s doctors asked me why I thought we had been given the gift of a recovered child when so many families had not, in spite of all of their efforts. The only thing I could think of is that I was meant to help the next family and I could not do that if I was still trying to help my own son. And that is what happened. I became a mentor to families who had no one else to turn to. Along with other like-minded friends with a child with autism, we became advisors to the next generation of families.
The families I mentored included medical physicians, nurses, psychologists, teachers, single parents, CEOs, therapists and ordinary families thunderstruck with grief at the loss of a future for their child. I was their life preserver during a storm, giving them information and hope; letting them know that their efforts were worth it. Of the hundreds of families that I mentored many children went on to improve significantly and around eight went on to full recovery. One of those was a boy who has been featured on news stations because he became a Junior Olympic diving champion after he lost his diagnosis.
What has been the most difficult part about this journey is the complete lack of information and misinformation perpetuated by the medical community and repeated within the autism community as fact. Among the myths that I have had to fight is there is no hope and no “cure” for autism, there is a 90 percent divorce rate in autism families and your child will end up in a group home or institution. When I tell families who have a child with autism that some kids are recovering I am looked on as a pariah, or some sort of delusionary vigilante. Then I point out a study by the National Institute of Mental Health, which surmised that up to 25 percent of children with autism do indeed recover. Personally I think the statistic is closer to five percent, but it’s a heck of lot more than zero. Here are some stories about this study that is still on-going:
http://www.physorg.com/news161026455.html
http://www.huffingtonpost.com/2009/05/08/autism-study-suggests-chi_n_200291.html
The bottom line is that information about autism and autism research is changing quickly. The fight has been led by the parents, not the medical community (unless they are parents of a child with autism too). It has been heart-wrenching to realize we are mostly on our own when it comes to advocating and supporting our children. The broader community knows who we are but knows very little about what our families go through daily. For the most part we are not a community bent on self-pity. But we have all changed, perhaps not in the ways we would have expected.
As I continue to write on this topic I will outline how parents develop certain core traits as they become empowered in the fight to recover and/or improve their child’s health. I will also be writing about the grief cycle that impacts every person and their marriage after diagnosis. Mostly I will be writing about hope, when so little of it is otherwise offered. And I will be letting you know how all of you can make a difference to these families.
God willing autism will never enter into your life-calling arena. But if it did, you can rest assured there is a legion of parents willing to step forward to help you navigate through the rocky shoals. I am one of them.
Mary Romaniec is a reporter and recognized authority and speaker on the subject of autism. Her own son’s recovery from autism by the age of 4 has inspired her to take on the role of mentor, writer and speaker. In addition to mentoring hundreds of families around the U.S. and the world she authored the 10 week GFCF diet calendar, which is in wide use in the autism community on various websites and quoted as a valuable tool in Jenny McCarthy’s book, Louder than Words. She has also written other articles on the topics of IEP negotiation, marriage topics and care for the caregiver. Her articles have appeared in Mothering Magazine, Autism/Asperger Digest, Autism Today and Journeys Magazine, Age of Autism, The Autism File, as well as other autism-related websites.
Her book Victory Over Autism, takes the reader through the personal stages parents will experience when their child is first diagnosed with autism; and how to use these stages to catapult to becoming part of the next generation of proactive parents who are making a difference in the well-being of their child and family.
