The Changelings–A Mother’s Introduction To Autism
“A changeling is a creature found in Western European folklore and folk religion. It is typically described as being the offspring of a fairy, elf or other legendary creature that has been secretly left in the place of a human child.”
My Great-grandnana told me when I had children to “Light a candle and keep it by the crib to keep the fairies away.” Apparently, sometime around 2 and a half years old, I forgot to light it, because in a matter of months, my twin boys disappeared and the Autism fairies took their place.
Zachary and MacLean were born and grew in a perfectly neurotypical fashion. They spoke (“Dada!”) at 5 months. Walked at 12. Spoke in complete sentences at 15 months. And, at 28 months or so, disappeared.
I still remember when MacLean started his regression. We were at our family cottage in Maine, standing on the dock and throwing the rake in the lake. (You moms know the drill, me standing in the chilly water, picking up the rake and handing it back to MacLean to throw back in again.) “Rake in the lake, MacLean, rake in the lake!” He looked at me, waved for the rake and grunted. Pause. “MacLean, rake in the lake, right?” Another grunt. Zachie was soon after. He stopped learning new words. He developed a shrill scream and began to bite down on his little fingers until they were red and swollen.
We took them to our pediatrician. Tested for lead, tested for anemia, tested for allergies. Took them to speech therapy. And finally at 3 years old, my mother handed me an information sheet about Autism. I worship my mother. She’s the most incredible woman in the world. And, I threw the information back in her face and hissed “MY children do not have Autism!” It took me another year of denial and a developmental psychologist to understand that yes, they DID. These days, 4 out of 5 children on the spectrum are born neurotypical and actually regress into Autism. My boys were later than most, which allowed me to extend my denial, I suppose. Part of my heart died that day. I could actually feel it shutting down and closing up shop.
Interestingly, my Changelings do have a delightfully fairy-esque quality to them. MacLean’s mischevious giggle, the way he cracks up over secret and silly things. Zachie’s idle “La, la, la” singing and dancing dreamily around the kitchen. But here’s the important part. While it feels like the Autism Fairies stole my children, they are still in there. And you can’t forget it, not ever. Some parents are lucky or determined enough to bring their children all the way back out again. Some of us are still battling. Some give up. You can’t be in the last group, because there is always hope. Always.
Here’s what I have learned.
First: you are NOT alone. One out of every 54 boys in the US will be diagnosed on the Autism Spectrum, one in every 100 kids total. And the numbers continue to rise. If your child, your grandson, your neighbor’s kid, your niece, the quiet little fella in your classroon–if you think they have Autism then you have to be the one to get stuff thrown in your face–like my sweet Mom. You have to push for testing. And if that little one is on the spectrum, you have to be the one to hand the parents the Next Step.
Second: The Next Step. See, we didn’t have one. Most parents until the last year or two didn’t. Pediatricians would shrug helplessly and say, “uh, sometimes speech therapy helps.” Autism Speaks has a beautiful “First 100 Days Kit” to help you get started, to figure out the sometimes incomprehensible lingo. Occupational therapists? Gluten-free diets? ABA? What does ABA stand for? They’ll tell you.
Third: There’s lots of parents who’ve been through what you’re feeling right now. Find your community. You are not alone. Here in Utah, I love the Big Maks–“more support than a double D!” These are other parents who can offer advice and local connections. You will want to learn about diets and biomedical interventions. Nationally, Defeat Autism Now! is an incredible resource, and locally, Dr. Joseph Humpheries will help you. He has cared for my sons for 4 years and juggles his finances to accomodate ours. The development specialists at the State’s Clinic For Children With Special Health Care Needs are brilliant folks who will start you on your way.
Fourth: You need to read. You have to know that children have recovered from a diagnosis of Autism. That children on the spectrum can go on to lead glorious, happy lives with friends and bikes and birthday parties. Start with my local favorite: Leeann Whiffen, best-selling author of “A Child’s Journey Out Of Autism.” My first ray of hope was “Let Me Hear Your Voice” from Catherine Maurice, and there’s Jenny McCarthy’s crusade called “Generation Rescue” (read “Mother Warriors,” very inspiring and fierce.) Temple Grandin is the reluctant queen of the Autism community–she documented her own path through non-verbal Autism into an amazing career in “Emergence: Labeled Autistic.”
Fifth: You need to take action. I lived in denial for almost a year. I reasoned that it wasn’t Autism, but since I took the twins to speech and occupational therapy and Floor Time, I was doing my part, right? It wasn’t enough. Accept it. Cry. Kick and scream. Get totally pissed off. But until you accept the diagnosis, you can’t truly take action.
Sixth: Once again, there is always hope. My Zachie looked at me tonight when I was putting him to bed, and finished the song I was singing to him. It was the first time I’d heard him sing in 4 years. “You remember the song!” I whispered. He looked at me like I was an idiot. “I never forgot, Mama.”