Our Story of Recovery
Our Story of Recovery
I want to tell you our story. I think it will explain why I believe in biomedical interventions and why I believe children can recover from autism.
Matthew was our first child. The day he was born it snowed, a big East Coast snow, but I didn’t care I was getting my baby boy. When he was born he was purple. When he was born he was silent. When he was born he wasn’t breathing. I thought he was going to die. Within hours of this traumatic birth he was given the Hepatitis B vaccine. He could not breast feed, he would rarely wake up, he was jaundice and something just wasn’t right. We took him to myriad of doctors and specialists trying to figure out why he couldn’t breastfeed, why he couldn’t pass stool, why he couldn’t hold his head up, why he startled at every noise so severely that his whole body shook, why he started to flap his right hand in front of his eyes and make a guttural “ahhhh” noise, over and over. Finally at 9 months of age our pediatrician recommended we contact our local Infants and Toddlers program.
They said he had hypotonia and needed physical therapy. We kept pushing them to look at the hand flapping and repetitive vocalizations and at 18 months they decided they saw what they called “pink flags”. They wouldn’t actually tell us what “pink flags” were, but we knew they were thinking autism. They got him occupation therapy, speech therapy and in-home special education. By age 2.5 we took him to Kennedy Krieger Institute to be evaluated for autism. He was diagnosed with Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS). Of course I became obsessed and after spending hours upon hours on the internet I found the GFCF diet. I didn’t try the diet until I saw Jenny McCarthy on Oprah. I figured what did I have to lose, and more importantly, what did we have to gain?
My husband was out of town the week Jenny appeared on Oprah, so I made the executive decision all on my own. I also decided to go cold turkey. I fed my son the only safe foods we had in the house, and within three days of starting the diet my son spoke his first full, novel sentence of his life. He climbed onto our kitchen stools, then onto our kitchen counter and looked at me and said “I watch mommy make dinner.” Not only was this his first sentence, at age 2.5, but it was the first time he climbed into anything. With his hypotonia (low muscle tone) he could not even climb the stairs in our home. He has never climbed anything so tall or requiring so much motor planning.
When my husband arrived home that week he couldn’t believe the difference in Matthew. Being the skeptic that he is he insisted we do a challenge and add the milk products back in. Of course Matthew regressed almost immediately, and improved once the milk was eliminated from his diet. Even our Speech Pathologist (SP) from Infants and Toddlers noticed the change immediately. We did not tell anyone of our little experiment, but the changes in Matthew were so dramatic that they noticed. Our SP pulled me aside and wanted to know what we had done because Matthew was now using sentences, seemed more focused, could make eye contact and had significantly decreased his visual stims. He was far from recovered at that time, but it showed us the possibilities. We have worked with doctors, therapists and practitioners to find the right combination of interventions and therapies to produce the best results in Matthew. Is he fully recovered? Not yet, but many people can’t believe he is on the spectrum. He tells jokes, laughs, has empathy, holds conversations, makes analogies, and is making progress every single day. Stay Well.
Maryann DellaRocco is the mother behind the blog Matthew’s Puzzle, which chronicles her journey into the world of autism and biomedical interventions. She is married and has three boys, her oldest is on the spectrum. Follow her on Twitter: @mehmig.