Submitted by kim on Wed, 07/09/2014 - 13:03 in Nathaniel's Story
Yesterday was action packed. Nathaniel started the day with occupational therapy before breakfast. We painted! Since Nathaniel started walking he has not had much interest in fine motor activities. He just wants to walk. But he also loves going for walks and therefore loves his Kid Kart stroller. This week I have been adding fine motor activities into his day by using the Kid Kart and tray either before or after our morning walk. Painting went well. He started with the brush and then went to hands; very age appropriate. He had lots of smiles and paint everywhere.
Notice the blue foam around his g-button in the second photo. Nathaniel has grown and the g-button is exactly at the tray level. His g-button has been leaking lately so I am trying to protect it as much as possible. I not sure this system is going to work; he might just need to grow a little more and get his tummy above the tray. Apologies for the slightly blurring photos. Painting was a fast moving activity!
Our family took a picnic dinner to the park. Remember that "I'm-afraid-of-playgrounds" kid at the beginning of the summer? Not anymore! We can now cross going through a tunnel and down a slide off Nathaniel's To Conquer list. And doing it all while wearing new AFO braces on his legs and carrying his feeding pump!
We have speech therapy on Tuesdays too, and I discussed with the therapist the need for 'loud' as a sign. I want Nathaniel to feel like he can communicate his fears when we are places that cause sensory problems. We decided on the hand over the ear so it can grow into a defense and coping mechanism. When something is loud we cover our ears with our hands. Side note - as we offer Nathaniel language tools, his therapist has led us in making new signs practical and achievable at his current fine and gross motor skill level. ASL for 'loud' is neither for Nathaniel right now. But twice this week we have been somewhere that was too loud for him. He needs a way to tell us this! Since we are learning his signs along with him, the only thing that really matters is that we all know the sign of choice and use it consistently. As he grows in skill and his world broadens to include other caregivers, his alternative communication tools will also grow.
We practiced 'loud' in therapy with the therapist or I creating loud noises while the other modeled the sign and offered hand over hand assistance for Nathaniel. He never demonstrated the sign independently in therapy. But at the park when a little girl screamed, his hand immediately went to his ear. Was he signing 'loud?' I do not know. But just like a mother who assumes her child's vocalization of "ba" equals ball, I immediately responded as if he was telling me 'loud.'
"Yes, Nathaniel, it is very loud right now! Thank you for letting me know it is too loud for you!"
He smiled. I happened to have my camera in hand and got a photo. I can focus on one of two realities when I look at this photo. The leg braces due to low tone, the feeding pump due to oral aversion, the need for alternative communication due to the trach. Or I can see the dirty knees from the playground, the dried blue paint on the face, the attempts at communication, the smile at being understood. "Finally, brothers, whatever is lovely... think about these things."