Never Taking Our GIFTS For Granted: A Mission Of Hope

I feel so blessed to know Mary Romaniec while on this autism journey. She has helped me so much with her words of wisdom that have inspired me not only in helping my son Christopher, who has severe autism, but also in healing my own sometimes broken soul. Mary has written here before, about overcoming guilt and on the Ask The Experts series. She also served as the beacon of hope that Sarah wrote about in her guest post here earlier this week. I’m sure that there are countless families that Mary has helped, and I personally can’t thank her enough for using her son Daniel’s recovery to help and heal others. She has truly fulfilled her mission, and our community is beyond grateful. 

The Mission Ahead

“You know you are going to win the autism lottery,” said the DAN! doctor who would first treat my son.  He had just turned three and the latest labs pointed to all biomarkers for significant progress, marked with minor issues which were next on the list to tackle. 

“I know,” was my reply, with tears of gratitude forming.

“Why then do you think you were given this gift of a recovered child when so many other families are struggling to help their children?” she asked in all sincerity and admiration for the miracle unfolding before her. 

“Because I am meant to help the next parent, and I can’t do that if I am still focused on my own.”  And with that pronouncement a shiver of knowingness went through me as if to confirm the mission ahead.  Help the next families find answers. 

Autism Recovery

One year later, on his 4th birthday, my son’s pediatrician proclaimed that he no longer would qualify for the autism spectrum diagnosis.  In an astonished tone he said, “Mrs. Romaniec, I have never seen anything like this.  And it’s all due to your work.”  Hearing those words were affirming and validating, since he also bore witness to those early days right after diagnosis.  Yet, here was the child that did not resemble the screaming child in his office just two years earlier. 

Admittedly it’s getting tougher to talk about those early days.  I still stifle the recollection of the nights of him screaming as he writhed in pain.  The memories remain of the non-stop diarrhea, the nagging sense I was failing at everything, and the overwhelming fear for our collective futures. 

Yet, on his 4th birthday, after the pronouncement from his pediatrician, I ran the final Autism Treatment Evaluation Checklist (ATEC) to see how far we had come.  One that day, he scored a 4 ironically.  At his worst, which was right around 18 months, I scored him at 106 out of 136 data points for severity of autism.  I was hoping in that initial evaluation he would score “mild” or “high functioning” (whatever that meant).  Instead he was on the more severe side.  I don’t recall the next time I completed the checklist but it was marginally better – somewhere in the 80s – likely because we had started dietary intervention.  After that, I ignored the test and just focused on whatever was the next tidbit of information that might lead to answers. 

Many people know our story of our success with intravenous immunoglobulin (IVIG), beginning his first treatment at 2-1/2 years old. Infusions were done monthly and within four months he said his first full sentence.  At the one year mark for infusions he opened Christmas gifts without shrieking at the sensation of tearing paper.  Instead he cupped my face in his hands and said, “Mewwy Kwisman Mommy. I wuv you.”  Nothing else will come close to that gift from my son that day. 

Continued Success

Milestones over the years came slow and steady, but they came on target with his peers.  In many other areas, he was ahead of his peers in talent or ability.  A few years ago while still in high school, he began creating electronic dance music on his iPad.  The Electronic Dance Music (EDM) genre involves musicians collaborating with each other all over the world to make and share music.  Within this community he had found his niche and total acceptance as an equal.  It was when he sent me one of his early songs, which he wrote and produced with a singer in New York, that I finally understood his future would be his own entirely.  I played that song over and over when he first sent it, and scores of times since to remind me how his talents will one day inspire many others.

Today he is finishing up his sophomore year in college, where he is a film major and music minor. He still collaborates with musicians in the EDM community and has a strong following on Spotify and Soundcloud. 

In a few weeks, we are speaking together about his journey at the 2019 National Autism Conference. This was his request. He understands the impact he has made, and the families he has unknowingly helped by virtue of the trajectory of what was set in motion because of him. The lives we touched are incalculable. He knows it. Thankfully he also understands with humility that he will continue to give back in some way as he begins his adult journey. 

The Next Chapter

With a measure of swan song in mind, this will be my last autism conference. With gratitude, it is time to step off the stage after 18 years of advocacy. In two years he will be a college graduate in the job market. While we are less concerned about stigma than days past, it is not a stretch to suggest a simple Google search of his name will lead to mine. No, his future is his own now.  It’s time he steps on his own stage, with his next chapter of successes that have nothing to do with autism.

As for me, I will continue to be his biggest cheerleader, and for my other two children. It is a season of tremendous joy in our family, another gift we won’t take for granted.  We will continue to pray for healing in all of our families that they too one day have this same season. 

With heartfelt gratitude, we bid adieu.

Mary Romaniec is a reporter and the mother of a child who recovered from autism by the age of four. In addition to mentoring hundreds of families around the U.S. and the world, her articles about autism have appeared in Mothering Magazine, Autism/Asperger Digest, Autism Today and Journeys Magazine. 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. Mary discusses the stages of grief associated with the diagnosis, followed by the winning attributes parents will either possess or adopt as they strive to the goal of better health or full recovery for their child. And a better future.