Voices of Autism: ‘Just As Beautiful’
Every day throughout April–Autism Awareness Month–we have featured a different reader-submitted story about living with autism. Today, for the final day of the month, we will be publishing two stories. The first story was written by Cheryl Ryan Chan, mother of Nicky. (The second story will be published in a separate post later today.)
Most stories about autism start out the same: baby born, normal development, toddler suddenly or gradually developmentally delayed. Ours is similar, but it takes a dramatic turn at age 6. It was then that our son began to turn violent and aggressive, toward himself and toward us. At first it was manageable; I could pick him up and carry him out of any situation, get him redirected quickly, or avoid a lot of situations altogether. But those “situations” became more frequent, and our world became smaller every day. The violence, the aggressions, the stress continued. Nicky had no language, severe social impairment, no cognition. His skills were that of a 9-12 month old.
We tried everything. Medications, diet and biomedical interventions, vitamin therapies, play therapies, social skills therapies, augmentative communication devices, speech therapy, sign language–we did them all. Some helped, briefly; most did not.
By age 10, our public school was begging us to place Nicky into a special school, where he could get the kind of therapeutic interventions he needed. We were determined to keep him with his peers, who loved him and did everything they could to help him. For us, removing him would be permanent. What if they forgot about him? We said no.
By age 13, there was no doubt that he had to leave the school. His peers had grown afraid of him. He was separated all day. He entered a day program. After a year, even that was not enough. At home, we had become prisoners to Nicky’s every move. Whichever parent he was targeting had to sneak in and out of the house any time Nicky was there. That left the other one, either my husband or myself, alone, trying to avoid causing his wrath or anxiety. Blood smears lined the halls upstairs. Holes in the walls from Nicky putting his head through them were seemingly everywhere. Sometimes it was just easier to let him hit us, so we would stand there as he did, protecting our heads and faces as best we could, until he exhausted himself.
It seemed better than taking that next step to sending him away. That was horrifying. What kind of parents would do that? Then we took him to the Emergency Room and said, “We can’t do this anymore.” We were told that we were doing the best thing we could do as parents, and on that day, we began our journey of healing and strength.
Fast forward four years. Nicky is in a residential school one hour away. He comes home every weekend, and we laugh! We enjoy every minute together! Four years ago we never imagined we would be here, happy, healthy, whole.
I know there are many out there like us, but they are scared and ashamed. That is why we tell our story now–to give others like us permission to talk without shame, to inspire others to speak out. You are not alone.
Not all stories are warm and fuzzy, but ours, as you can see by our picture, is just as beautiful.
To read previous stories in this series, click here.