Joseph Rose

When I see movies or read stories about other autistic kids, I feel lucky that Darwin doesn’t exhibit so many of the difficult/sad/dangerous behaviors that many others do. In general I find him to be a happy and affectionate child, whose only real demand in life is for french toast.

What I forget sometimes, is that he is only 4 years old and that his personality and behaviors will surely change. And, they are. In recent weeks it’s become pretty common for him to bash himself in the head repeatedly with both of his hands while he yells, often with tears streaming down his face. What could trigger such an extreme and self-abusive behavior, you ask? Well today it was because he dropped a wooden stick (tongue depressor) on the ground and couldn’t have it back. How much of that is age 4 behavior and how much of that is autism behavior? I have no idea. Regardless of the reason, it’s fucking ugly to see, and it kills me that I don’t have a way to prevent it from happening.

I am so scared for what autism might look like at ages 10, 16, 25, 40, etc. If there were a kind and merciful god in the sky somewhere, he would make sure that my son and I leave this world at the exact same moment so neither of us would need to struggle along without the other.

But there isn’t. There is much suffering ahead for us both.

Darwin is 4 years old and has Autism. As far as we can tell, he has very rarely (if ever) engaged in any “pretend play”. No car sounds, no jumping over hot lava, no action figures interacting with one another, etc.

He does show a great fascination with letterpresses and other machines. I have several letterpresses at my house and Darwin watches me print with them quite frequently. I recently saw him pumping the back of his toy airplane the way I engage the lever on my Kelsey Excelsior letterpress. Then, this morning I managed to catch him on video in the midst of a full print run!

I love this kid.

Darwin will turn 4 later this month. It dawned on me today, that as far as I know, he’s never pretended anything. He’s never pretended to be a horse, or a ghost or a monkey. If he pushes a toy car, it’s only because it happens to have round wheels that roll, there are no car sounds or pretend roads. There is no hot lava at the playground, no shark swimming below.

No seriously, donate. I’m doing the Walk for Autism Speaks thing and my goal is $1,000.

http://www.walknowforautismspeaks.org/philadelphia/megahurt

I took this photo this morning at the local library toddler play group. It sums up many things about my son, and I hope he’s able to keep this attitude for many many years, despite the fact that it may be “inappropriate” on some level.

It was taken toward the end of the play group, as all the kids were directed to sit down around the outside of the play area, and sing some songs. Darwin felt like dancing around the room with a giant smile on his face instead. It was beautiful!