Parents of children with autism will never tell you that raising their child is easy…it’s not! I joke around, look for the silver lining, take things in stride, and present a smiley face to the world. However, raising my son, Steven, has been, and continues to be, an extremely difficult parenting challenge.
Memories of how hard it has been flooded back to me when my hubby and I went away for a romantic weekend at our little cabin in the woods of New Hampshire. With the sub zero weather whirling around outside, we were sitting on the couch sipping hot chocolate with lots of tiny, melting marshmallows. (Okay, maybe HE had some Kailua in his, but mine really DID just have marshmallows!) As the heat rose up from the small grate on the floor, I was transported back to the time when we first purchased the cabin. Because Steven had such severe sensory issues and taking him to a regular hotel for a regular family vacation would have caused a regular catastrophe, we sought out a calm location to which he could become accustomed. Thus, the family vacation cabin was born! He was only about a year old when we bought it, and he soon adapted well…he continued to wake at 4 in the morning to run around the house (which was carefully modified for safety.) He continued to refuse to eat any textured food, subsisting on cans of Chocolate Ensure. He continued to hide under the bed if any company came to visit, or if it was too windy out, or if the clock ticked too loudly or for a variety of other reasons known only to him. He would curl up in a ball under the kitchen table if there was too much noise, or light, or if he just plain felt like it. However, he also had the little pond behind the house where he could catch frogs, turtles and snakes for hours…HIS idea of a great vacation! In other words, he behaved just like he did at home! Our family vacation home was successful!
We enjoyed, and continue to enjoy, many years of quiet, restful activities on this little house in the woods. The only reminder of a behavior to which we could never accommodate… Steven’s self-abusive “episodes”…is a scar on his forehead. It has faded over the years and resembles a tiny tic-tac-toe board.
Last weekend, sitting on the couch enjoying my hot chocolate, I glanced over at the heating grate and shuddered, remembering the one time he was so out of control that he banged his head on the heating grate before we could restrain him. A hard, deliberate bang on the only dangerous spot in the house. It was a reminder that as hard as we tried to have a “regular” life with Steven, we could not always keep him safe…
That is not to say that this is a complaint. It’s more of an observation. Raising kiddos who are autistic changes a family’s life forever. If you know someone who has an autistic child, give them a pat on the back. They probably haven’t had an easy life…
To read more about our life as a family, please read my book. Here is a link: