When expectant parents are told that their unborn baby has spina bifida, it's not happy. The moment is full of fear and what ifs and I don't knows. It's scary and easy to assume a terrible outcome. And unfortunately, there are so many outdated thoughts out there. I think it's up to this new generation to redefine spina bifida and show that this diagnosis isn't the end of the world. These kids lead very happy, productive lives.
Anna's kicking butt at school. She's right where she should be with respect to learning. Our main concern, everyone's main concern, is keeping her physically safe. I think her PT's assessment best describes Anna. When you read her diagnosis and then watch her in action, she's amazing. It's incredible how well she does. It's when you compare her to other kids that you really see her physical challenges.
So keeping her safe and comfortable at school involves considering:
- How is Anna going to get from one location to the next? Does someone walk next to her? Does someone hold her hand?
- Visits to the nurse.
- Playground safety. Anna knows her limitations so concerns revolve around her being accidentally bumped into and not able to catch herself.
- Ability to rest during gym class.
- Location of her classroom to the entrance/exit.
I was caught a bit off guard when, at the end of the conversation, we were told that under state law, they need to inform us if they believe Anna is at risk for being bullied. She is not. But it made me sad to think that there are other parents who've had to have the opposite conversation. The other kids really like Anna. She stands out a bit because she's so little and cute (and a triplet) and a lot of people within the school system know who she is, which apparently helps prevent bullying. I'm also trying really hard to teach my girls to like and respect themselves and others. Not that this would prevent them from being bullied but I hope it will help them be better people.
Rich and I have been extremely happy with our district's school system thus far. They offer a lot of resources and support and the teachers and therapists know Anna really well. When we discuss her progress, they describe her in such detail. She's not just another kid in the system. (The same goes for Emily's and Allie's teachers too.)
- Spina bifida is a condition, not a disease. It can be treated but not cured.
- Spina bifida is one of the most common birth defects. (I personally hate to call anything in a person a defect, but medically speaking, that's the terminology used.)
- Having a shunt doesn't mean that you will have learning disabilities. Anyone can have learning disabilities.