Sometimes I will have someone contact me through Facebook or my blog to ask about adoption or Cerebral palsy. Recently I had someone contact me with what I thought was a great question. This woman was considering adopting a child with CP and she wanted to know what daily life was like for us. In other words she wanted to know what it looks like to live with CP in our house. She was wondering what made life with CP different. I'm going to share with you what I wrote to her. Before I do I'll say that life with CP looks different in every house. CP is interesting to me in that it can be so mild that it is virutally undetectable...or so severe that the person requires total care...and everything in between! Another reason CP might look different in my house is because Oksana also has an intellectual disability, not because of the CP, CP does not cause an intellectual disability, but it is brain damage and Oksana just happens to have plenty of it, plus she has microcephaly (her head is smaller than normal for her body size). On most days I would tell you that the cognitive aspect can be more challenging than the physical aspect! Most of her friends with CP do not have any cognitive delays. This is what I wrote in response to the question as an example of what a day looks like here and the things that we need to do and consider because of CP.
Having a child with a physical disability certainly changes daily life. Everything you do has to be seen through the lens of the disability. So for example, to start the day...Oksana gets out of bed and she has to have her toilet seat adapted so that she can sit without having to support herself which can be very tiring (we do this with an insert). She has to be streched EVERY SINGLE morning before she starts her day which takes 10-15 minutes. I have to do much of her dressing because she doesn't have the motor skills to do it all herself. I have to be thoughtful of what I chose for her to wear. We don't do dresses at school because she is not able to keep them out of the toilet ;), and leggings are best because they allow her the most independence since they have no fasteners. Of course she puts on her AFOs and shoes (not many cute shoes here, AFOs tend to seriously limit your shoe choices!) and she is off to breakfast. Depending on what she is eating she may need assistance eating breakfast. She's getting MUCH better at this but, for example, scrambled eggs can be tricky because she is not good at balancing food on her fork and getting it to her mouth. If you can't poke it or it doesn't stay on the fork easily she will need help. At school she needs an aid full time but this is also for her cognitive delay. Physically her aid helps her maneuver through the room (even getting in and out of a chair is a challenge without some help), move through the hallways, helps adapt her PE, helps her eat lunch, helps with her toileting (no toilet insert there), etc. When she is home for the day if we have errands to run, or an activity to go to, we need to ask ourselves how she will get around...where are we going?...can she sit in the cart?....can she walk, or is the store too big?....do we need to bring her wheelchair? If it is an activity, can she do it independently? If not what do we need to do to adapt? At home she is really self sufficient. Our home is set up so that she can maneuver around it with no help. These are things that I'm not sure a lot of people think about who don't live life with a child with a physical disability. That's the reality of it but here's the thing...just writing that I'm thinking to myself, wow, that sounds much worse than it is! When she first came home it all felt horribly overwhelming. But I don't even think twice about all of it now, it's second nature. I make those decisions, do those things, and ask myself those questions without even realizing I'm doing it.
If you or your child has CP how is this similar or different to your daily life? If you don't live with CP what surprised you or what didn't you know about what a typical day looks like? If you have any questions about CP, Oksana, or what a day with CP looks like, post it in the comments and I'll answer it in the next post.
