Helpless.
Both Ella and I felt helpless.
I had Ella sitting in a chair and she wanted to play with a plastic baby bottle. It was given to her and everything around us went on as normal...except...
She couldn't lift it to her mouth in order to pretend to be drinking from it. She couldn't do it.
Instead, she cried. In frustration she let unleashed her cry. We asked her to use her words and usually she is really good about stopping the crying and telling us what she wants. Not this time. Her cry didn't stop.
I saw the baby bottle in her hands which were loosely wrapped around it...her elbows bent at a slightly greater than 90 degree angle...her head bowed down as she cried. I came to her and asked her if she wanted her bottle. In between sobs she said, "Yes.".
I placed my fingers behind her bent elbows and produced a small amount of force against her arms. This allows her to use what little strength she has to continue the upward motion of her arms...it's almost like we are getting her arms up and over a hill. She brought the plastic baby bottle to her mouth and pretended to drink. She stopped crying.
When finished, she allowed gravity to pull her arms down. The bottle tumbled away from her. She looked at it and leaned toward it. Her head instantly bent upward making herself look at the ceiling--which is what she does when reaching to overcompensate for the feeling of falling as she extends herself. Since her head was positioned upwards she had no idea where the plastic bottle was...even if she did, she wouldn't have been able to get it to where she wanted it anyway. She cried again.
I helped her. I sighed to myself. I repositioned her so that gravity wouldn't have its way with her; she was content. I walked away and my mind was overcome by a wave of depression, confusion, and helplessness all at once. A simple plastic bottle, no more than 3 oz., is giving my daughter a hard time.
Sometimes I can't stand it.
We changed our "play plan" and found other objects that she could play with...things that she can manipulate and grasp.
It seems as though the "plan" is always changing...keeping up with SMA is proving to be incredible difficult.
Sometimes I can't stand it...
Both Ella and I felt helpless.
I had Ella sitting in a chair and she wanted to play with a plastic baby bottle. It was given to her and everything around us went on as normal...except...
She couldn't lift it to her mouth in order to pretend to be drinking from it. She couldn't do it.
Instead, she cried. In frustration she let unleashed her cry. We asked her to use her words and usually she is really good about stopping the crying and telling us what she wants. Not this time. Her cry didn't stop.
I saw the baby bottle in her hands which were loosely wrapped around it...her elbows bent at a slightly greater than 90 degree angle...her head bowed down as she cried. I came to her and asked her if she wanted her bottle. In between sobs she said, "Yes.".
I placed my fingers behind her bent elbows and produced a small amount of force against her arms. This allows her to use what little strength she has to continue the upward motion of her arms...it's almost like we are getting her arms up and over a hill. She brought the plastic baby bottle to her mouth and pretended to drink. She stopped crying.
When finished, she allowed gravity to pull her arms down. The bottle tumbled away from her. She looked at it and leaned toward it. Her head instantly bent upward making herself look at the ceiling--which is what she does when reaching to overcompensate for the feeling of falling as she extends herself. Since her head was positioned upwards she had no idea where the plastic bottle was...even if she did, she wouldn't have been able to get it to where she wanted it anyway. She cried again.
I helped her. I sighed to myself. I repositioned her so that gravity wouldn't have its way with her; she was content. I walked away and my mind was overcome by a wave of depression, confusion, and helplessness all at once. A simple plastic bottle, no more than 3 oz., is giving my daughter a hard time.
Sometimes I can't stand it.
We changed our "play plan" and found other objects that she could play with...things that she can manipulate and grasp.
It seems as though the "plan" is always changing...keeping up with SMA is proving to be incredible difficult.
Sometimes I can't stand it...
