Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Sunday, September 08, 2013

He Doesn't Always See

Sometimes Abel is blind. He is people blind. It comes from years of living in an institution where he was severely lacking in attention and stimulation. Let me explain.

A few weeks after Abel came home he came up with a game he developed on the stairs. He would throw his block down the steps (remember the block?) then scramble down to get it, then repeat the sequence. He did a lot of vocalization while playing this game, but he also shut out the world. We didn't know just how closed out we were.

Eventually the walls along the steps started to get wrecked so we had to put an end to the game. He was surprisingly accepting of this new restriction. But occasionally something would come over him. He would enter this trance-like state and move himself to top of the stairs. He would sit there a few minutes and eventually the familiar sound of the block hitting the walls on it's way down would reach my ears. I would stop the game and he would move on to other things.

One day I decided to sneak around the corner to watch his game very closely, and possibly surprise him with my presence so we could finally end this game that was now annoying the heck out of me. When Abel was at the bottom of the steps, I quietly moved to stand at the top. My plan was that when he returned to the top he would see me, be surprised I was there, and stop the game.

Only he didn't see me.

Abel tossed the toy to the top of the steps, watching it as it bounced around me feet. He scrambled to the top, gave it a dangle, then tossed it back down. When he moved to retrieve it once again he crawled around my feet to do so. He never knew I was there.

That is when I had a flashback to one of our visits at the institution. I blogged about it here. What I didn't say in that post is what I saw. Two little boys I had met three years before, who had been full of life, now sat nearly motionless in the corner of a room. They had become one another's stimming objects. One child lay on the floor, knees up, one foot crossed over his knee while he methodically tapped the head of the other. Over and over and over and over and over. The other boy lay motionless except for his hand which was straight in the air, tapping the foot of the other over and over and over and over. This was it. This was their life. They had become nothing but objects to one another; objects to be used for the only stimulation they could find in a world full of nothing.

Standing at the top of the stairs I realized Abel had slipped back to that world. In that moment I was nothing but an object to him. Something that got in his way and must be maneuvered around. Like the children who lay motionless in his room back in the institution, I was nothing to him.

Similar instances have happened countless times over the last few months. Today Asher and Abel were playing in the bedroom. I could hear that Abel was tossing a toy around the room (no throwing allowed) I moved to their doorway and stood still. Abel tossed the toy right at me, yet didn't see me. He moved to pick up the toy, reaching around my legs to get it out of the corner.

"Abel." I said, gently.

He blinked, grinned to himself, then tossed the toy again.

"Abel" I said, in a different tone of voice.

He blinked, then I could see his eyes focus and he saw me, standing directly in front of him. He looked confused, as if to say "Where did you come from?"

Abel still spends a lot of time in his own world, unable to see those around him, but each day he is with us a little more. Maybe one day he will choose to spend his entire life with us.




5 comments:

My Girls R Angels said...

Heart breaking, Leah! It must be very difficult to watch. :(

Stephanie said...

So sad! If only more people knew and understood how horrible those institutions are and how they suck the life out of children......I hope Abel keeps coming out his own world and more into the one going on around him.

Imogen said...

So truly heartbreaking. It is beyond tragedy when a beautiful child has needed to retreat into an inner world just to survive. That must just tear you apart to see Leah. I remember crying so hard when you shared the video with us of him rocking in his sleep. What horror these innocent children had to know :(

Hevel Cohen said...

You know, while it's sad that he had to have that defense mechanism, it's awesome that he is making progress!

Hevel from kosherkola.com

Leah Spring said...

Hevel, you are absolutely right. He has made HUGE gains in all areas!