I took Rebecca to story time this morning as I usually do on Thursdays. We walked in and sat on the floor with the rest of the moms/grandmothers and their toddlers. A few minutes into story time Rebecca was curious and got up to go look at something at the back of the room. A child was sitting on the floor with her legs out, and Rebecca walked right into her and fell down. Rebecca got up and continued walking to the back of the room, she grabbed a piece of paper, and started walking back to give it to me. She tripped again over the same girl’s legs and fell down. This happened a few more times within the next 15 minutes or so. Rebecca would be walking, and she would walk right into someone who was sitting on the floor and she would fall. Then the toys came out and the kids started playing. Rebecca got up to walk towards me and she must have fallen four times over toys just to get to me. I don’t think she saw them. I don’t think she saw the toys and I don’t think she could see the people’s legs on the floor. She was looking straight ahead while all of this happened, and I think that the lower part of her field of vision just isn’t there anymore. I was heart-broken. I scooped her up and excused ourselves and headed to the car where I just sat and cried. Is her vision already deteriorating that much? I know she doesn’t have the best night vision, but during the day, I just thought we had more time before it affected that. I had to leave story-time, I felt like no-one understood, and I felt like we didn’t belong there.
Last week I took Rebecca to Tumble Time, as it was recommended by her PT at Children’s Hospital. Rebecca’s vestibular system is non-existent. Basically, what keeps you and I upright, is not in Rebecca’s make-up. She has to work extra hard just to keep from falling over. So for therapy, her doctors have her doing PT on surfaces that have a little “give”, such as mats like they use at Tumble Time. Rebecca was standing on one of these mats last week, and the instructor came over and started jumping up and down on the mat next to Rebecca saying, “jump Rebecca!”. If she only knew how hard it was just for her to stand there. But people don’t know, and the don’t understand. I explained to the instructor after class, without going into too much detail, that Rebecca’s balance is not good and that we are taking the class to work on that.
I feel a little defeated today. I feel like we don’t belong at Story-Time or at Tumble-Time. Should I ask the parents at story time to have their kids move their legs in if they see Rebecca walking their way? And to pick up the toys that they leave on the ground because Rebecca can’t see them and may fall over them? They’d probably tell me to get bent. The world isn’t going to adapt to us, and I don’t yet know how to make it work. I am struggling today and I don’t have any answers. I don’t know what to do or how to handle these situations. But this is just the beginning, and I am going to find us in these situations more and more, so I need to figure it out.