Happy March, everyone! I've slowed way down on the disability related blog posts, but I have a few thoughts knocking around in my head and they are ready to fly out into the world. Here is a collection of things that I would love it if everyone heard this perspective (our teachers, therapists, and other nearest and dearest are great about all this stuff - this goes out to the wider world):
1. Short order cooking is fine. There is a frequently stated idea that everyone in the family should be eating the same food - this is easier and cheaper for the food preparer, (sometimes) healthier, and (sometimes) will cause the kids to eat a better diversity of foods. People like to proclaim that they won't be short order cooks, meaning cooking a different meal for different members of the family. I'm not anti-pushing your kids to eat things that are healthy even if it's not their favorite -I've spent way too many hours of my life doing battles with my kids over eating grapes, and I do usually make my non-orally averse kids try at least a bite of new foods. But this all-or-nothing short order cook thing fails to acknowledge the reality that many families have a family member who has an allergy, or who has a special diet for all sorts of reasons, or who has a strong food aversion. And if you insisted on them eating the same as everyone else all the time, they would have a terrible physical / emotional reaction and/or starve. I would love it if the dialogue around this was much more forgiving: ie, "It's great if everyone in your family shares the same meal, but fed is best. Do whatever works best for the health and happiness of your family, and this might very well be short order cooking."
2. When kids have a speech or writing disorder, it doesn't mean that they have nothing to say. It might mean that they need more time to get their words out, or they might need an alternative way to communicate something., but there are often lots of cool ideas floating around in their head, just like with other kids. Think about how frustrating it would be if you had all the same opinions and funny one liners and observations about the world as you do now, but you weren't given the time or tools to communicate those things? And think about how great it would be if, after some experiences of not having the time and means to express your thoughts, you are eventually given the right time, tools, and training to communicate, and you blow people away? If a kid is trying to talk and needs a little extra time to get through their sentence, it is so great when people give them that space and they get to express themselves.
3. When kids have trouble with the decoding part of reading, it does not mean they can't understand the content, or that they lack curiosity and eagerness to learn. This is similar to point #2. Kids might have trouble sounding out the word on a page, but then talk your ear off about the topic and ask questions at a depth that you can't answer without the help of Google and You Tube combined. Decoding is an important skill to keep working on at a pace that's comfortable for the child, but there are more and more options for audio / video in both books and Internet content, and this lets kids keep learning when their understanding and curiosity outpaces their ability to read. But if it's assumed that a kid's knowledge base and eagerness to learn is at exactly the same place as their ability to decode, for struggling readers that's going to be really limiting and frustrating. (Our school teachers and staff have been AWESOME about separating these things out.)
4. Whatever type of disability your child has, this does not diminish their worth, beauty, value as a human being, or unique contribution to the world. I think for most of you reading this blog, this doesn't even need to be said. But I would love to see this internalized by every maternal fetal specialist, every politician, and every person who makes decisions about who gets hospital care or dollar allocations. I wish this could be felt and known by every parent who is newly receiving a tough diagnosis about their child. Your child is amazing and will bring you so much joy and will bring out a part of your heart that you didn't even know existed!
Parents of children with disabilities, what would you like to say to the world?
