It Will Never Happen to Us

By Sandy on June 8, 2014

I remember hearing about children with the dual diagnosis of Down Syndrome and Autism a few years back. Shortly after Josiah was diagnosed, I joined a List Serv to get a glimpse of what life might be like for us down the road. It was comprised of a group of parents who had children with DS-ASD (Autism Spectrum Disorder).

Most of what they shared was daunting. Josiah was 4 at the time. I read horrifying stories of very destructive children, trashing houses and destroying furniture. I read of aggressive children, hurting themselves and those around them. Most of these kids were 6 and 7 years old. I remember thinking, this will never happen to us.

Boundaries, Borderlines and Barricades

By Sandy on March 27, 2014

Well what do you know? After months of Josiah sleeping relatively well, we are back to partying til the wee hours of the morning. This boy just does not sleep at night. Seems no matter how tired and lethargic he may act during the day, once 8 pm hits, he comes to life. The sky gets dark, the world begins to settle down and Josiah revs up.

All Behavior is Communication

By Sandy on March 18, 2014

Josiah does not speak. He doesn’t have to. He communicates quite well with his behavior. He lets us know what he needs much of the time and has discovered an effective mode of communicating without words.

When he wants a drink of water, he stands by the kitchen sink and hopes we notice. Or, if a cup or water bottle is near by, he picks it up and brings it to us. When he does not want the food that is offered to him at meal time, he throws it to the ground, plate and all. We have learned to use a lot of plastic around here. We’ve also gotten really good at grabbing bowls and cups and plates mid-air.

He’s Growing Up

By Sandy on January 24, 2014

Our little guy turned 12 a couple of days ago. Twelve .Just a few short years ago we were bringing Josiah home from the hospital as a new born, with both of his eyes patched, not really sure what life would look like from that point on.

Then in the blink of an eye, he’s 12, on the cusp of becoming a teenager and growing facial hair.

When did that even happen? When did this little guy grow to be a mini man? When will he start shaving? How is that even going to happen? I watched him in the tub this morning, trying to figure it out.

3:31 AM

By Sandy on November 5, 2013

Before I even open my eyes, I know it’s 3:31 am. Josiah has entered our dark, sleepy bedroom. Happens lately, just about every night. OK, so some nights, it’s 3:30 and not 3:31, but seriously, we JUST turned our clocks back an hour. Shouldn’t that impact this even a little?

Josiah has been (knock on wood) sleeping so very well for so very long now, I shudder to think this is becoming a new pattern. Yet, I know it is.

He enters our room in various ways. Sometimes he is quiet and stands motionless by my side of the bed. Sometimes, he barges in, swinging the door with great gusto, laughing as he enters.

Sometimes, I hear him bouncing on his knees even before he makes his presence known.

Occasionally, I’ll hear the water in my sink running.