Mila has always been a puzzling kiddo. I truly believe that in her mind, she is just like every other kiddo. I think a lot of her anger and frustration is due to her lack of independent mobility. If her sister is finished with one activity and ready for another, she gets up and walks there. Mila relies on an adult to get her there. If one of us doesn't get to her right away, she gets frustrated and angry. (Which then in turn makes the adult frustrated due to her yelling/screaming at us). I try my best to be understanding, knowing that it must be horrible to have to depend on someone to help you at all times, when all you want to do is be independent.
Mila got a manual wheelchair two years ago. The team suggested that she needed a reverse configuration chair (big wheels in front, small in back) in the hopes that it would be easier for her to maneuver herself. We've encouraged, the school staff and support team has encouraged, but she has made little progress towards propelling her chair far distances independently. She has a KidWalk (a supportive walker with a seat), that we hoped she would make movements in. She wants to be like everyone else, why wouldn't she move? Mila can take steps in the KidWalk with minimal assistance, but struggles to move long distances independently. She can propel the wheelchair short distances, but with one arm much weaker than the other, she doesn't get far before she is tuckered out.
Before Mila's surgery last winter, her PT suggested we call a Wheelchair specialist in town and possibly try out a power chair. We waited until she had healed from surgery and was cast free and then made the call. Mr Chuck called and asked me many questions about Mila. Two weeks later he delivered a trial power chair to school.
She began slow. This chair was new, was foreign to her. It took time to get use to knowing where the chair was in space. "She" was wider, and had to be more cautious going through doorways. She asked every morning upon arriving at school, (and before getting to school, upon waking up each morning) "Can I try my new power chair?"
School is now over and we were able to bring the power chair home to try in our home environment. Yesterday she asked all day, "Are we going to get my power chair? When are we going?" All I had to do is look at her and she would answer her own question "...later, after dinner we'll go get my power chair..." She powered around the yard and driveway last night when we got home.
Today, upon waking up she asked "Can I drive my power chair today?" After breakfast, we went outside to play. Mila was in her power chair, Eli in his bike, and Hannah pushed him. We were out for 2 hours. Mila was the happiest I've seen her. She would come up to me, ask me "What do you want Mama? I would give her my order, and she would happily respond "coming right up!" and wheel away, always to the same spot int he back yard, next to the deck--that was her 'kitchen'. Next thing I knew she would be back and give me my (pretend) order, and be off again.
Any other day before PC (power chair) she would ask to be at one activity--swing, laying/sitting in the "house" of the swing set, or at the sand table, and 10 minutes (sometimes less) later she would be yelling to move to another activity. This afternoon we were out for another 2 hours. There were spots in our yard where the grass was smooshed!
I hear from Mila a lot, "I wish I could......" and her voice tapers off as she looks at her sister/cousin/classmates doing typical kid stuff. Today, my little girl felt free. She had her freedom to go and do what she wanted, when she wanted.