Plinth Blog Special Needs Parenting



This is not a writing post. This is just a picture post. My daughter is 14 which is hard to believe (said every parent ever). Alice was born on March 20th, the day before World Down Syndrome Day. Why is March 21st World Down syndrome day? Because it is 3/21 which is a shorthand for Trisomy 21, the more formal name for Down syndrome.

This is Alice opening a gift - see her using two hands? Gifts are great for that.

We opted for 1 candle instead of the 14 candle fire hazard. I'd intended to get those large number candles, but they didn't make it onto my shopping list. So instead, I printed out a nice 14, cut it out and used it as a stencil with cocoa.

Alice requested vanilla cake with vanilla ice cream. It is, of course, gluten free and I knocked together a quick vanilla buttercream frosting.

How can you not be happy on  your birthday?

E knitted Alice a nice shrug and she's wearing a bracelet that her brother made her.

Happy birthday Alice, and happy World Down Syndrome Day.

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Having a Child with Down Syndrome, Part CXXIII: More Cooking

In our current society in the United States, it is not necessary to be able to cook beyond operating a microwave. Unfortunately, most of what you will get from experience will be unhealthy, expensive, revolting, or all three in some measure.

Cooking for Alice, in theory, has an additional challenge: no gluten, as she has Celiac disease which comes along with Down syndrome at a rate of 7-16%. In practice, it's not that much of a challenge if you are prepared to read labels and to cook from scratch ingredients most of the time, which is something that we have done in our house anyway, so it's not so much of a big deal.

Every couple of weeks, I try to do some cooking with Alice, usually from a recipe and at her current state of development, she can read a recipe if she concentrates but needs help following every step. So I give her the recipe and let her tell me what ingredients I need and I get them out. It's not a complete mise-en-place, but it's close enough. I think that in my copious spare time I could rewrite recipes to be more accessible for her, but sometimes you just have to work with what's in front of you.

This time around, I saw a recipe from Alton Brown for oatmeal banana bread and it looked like it would be a good candidate for modification to make it gluten-free. The first thing to work with is the oats. Oats are in theory gluten free, but may be processed in a facility that also processes wheat and that's no good. Also, be aware that some people with Celiac disaease also have problems with oats because of the gliadin protein. So we started with Bob's Red Mill Gluten Free Oats.

which will at least be free from cross-contamination. Then we set up my pseudo mise:

For most recipes, a mise-en-place doesn't help me, but I'm not doing this. Alice is doing it and organization will set you free. Brown's recipe calls for all-purpose flour, but we're going to use Namaste gluten free flour. No GF flour will ever be a perfect substitute because of the missing proteins, but for this recipe it will work because banana bread is not bread. It's cake. Cake has different requirements and textures and GF flour is closer to cake flour so it is what is.

I had Alice work through the steps and tried to get her to do as many of the steps as possible.

The food processor is a little scary because this is not a device that I want Alice to try to use on her own, but it requires 4 separate steps before it runs, so I'm pretty sure that she won't be able to do this on her own.

I let Alice inspect the batter after each egg and let me know when it was all mixed in.

Here is where the rubber meets the road. Alice didn't want to work her stroke-affected hand, but I'm sorry, she needed to peel the bananas with two hands (works so much better). And hey look, I chose the bowl with the handle on it because mashing bananas is fun and even better when you need to use two hands.

Batter goes in pan.

Loaf comes out of oven to cool.

And into slices.

And it's nice when it gets served with a nice dollop of whipped cream.

In the end, Alice and I got to spend time together that was a positive learning experience for her and time when she's not actively yelling at me. And it was delicious.

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Not Sure Where This Goes

A human being should be able to change a diaper, plan an invasion, butcher a hog, conn a ship, design a building, write a sonnet, balance accounts, build a wall, set a bone, comfort the dying, take orders, give orders, cooperate, act alone, solve equations, analyze a new problem, pitch manure, program a computer, cook a tasty meal, fight efficiently, die gallantly. Specialization is for insects.

-Robert A. Heinlein

This is not a special needs parenting blog per se. It doesn't fit in my tech blog either, but given the two it feels like it fits better here. I've read a ton of books and for authors that I like, I usually try to read their entire work. I've read a lot, but not all, of Robert Heinlein. There is some of his work that I truly like, but he's hit-or-miss. This quote is one of my favorites, though. When I was taught technology in Hatfield, I put this quote up on my walls going around my room with one item on a single piece of paper. At present count, I've done 15 of these personally, just shy of 80%, which I take as a matter of pride.

Another thing that I take as a matter of pride is cooking for my family. Part of it comes from a Yankee stinginess wherein I know that I can feed my family is a way that is frugal and healthy. Part of that is a product of my upbringing. My mom, quite honestly, was not a terrific cook, although there were some things that she cooked quite well. What I mean by this is not what my mom cooked, but rather the things to which we had access. When I was young, there were two chefs that I saw on TV: Graham Kerr and Julia Child. I remember a time when Julia child did a recipe for Chicken Kiev. My brother Pat spotted it and mapped out every time when it was being broadcast. He watched it at every available time and took notes and then made it with help from my mom.

When I was in college, I watched Jeff Smith (the Frugal Gourmet) and once in a while, Martin Yan. From these, I tried new things, some which worked and some which didn't. Both the successes and the failures were learning experiences and encouragement to try more. When I was moved to Silicon Valley, I discovered farmer's markets, which were a fantastic source for fantastic produce. Inevitably, I would buy too much. So what do you do? Throw it away? Of course not - I took up canning. In one year, I remember that I canned something on the order of 10 gallons of jams, jellies, and chutneys that I gave out as gifts as well as enjoyed at home. I was inspired by a co-worker, Treve Bonser, who made fantastic pastries and sweets and brought them in to work. I asked him why he did this. He said that once in a while he wanted a cookie, but you can't make one cookie so he brought in the rest.

All of these things were formative experiences.

So here's what I've got tonight. I roasted a chicken for dinner - no big deal. After we were done I put the carcass into the slow cooker along with wilty vegetables from the fridge and some herbs, topped it up with water and set it go. When it's done I'll have close to a gallon of chicken broth which is way, way better than anything that you can get in a can. More often than not, I end up with something close to chicken gelatin when it cools. Then comes homemade soup. Why? It tastes good, it uses leftovers and has way less salt than anything you get in a can, and quite honestly, making soup doesn't take that long. Or I'll use it to make rice. Or as a basis for a sauce. Chicken broth is like a 2x4, just waiting to be used for any number of things.

And then there are the sales at the store. Our local grocery store often does "buy one, get two free" sales. I keep my eyes open for those and do my best to take advantage. For example, last week they mushrooms for sale. So what do you do? Can them.

Mushrooms, garlic, onion, peppercorns, salt, vinegar, water turn into a jar full of umame.

And all of this I take with pride. I do my very best to provide my family with healthy food cooked from good quality ingredients that are, if possible, grown locally (and many times from our back yard).

Why yes, my house is a mess. Why yes, I'm routinely behind on home maintenance. Why yes, there are three loads of laundry that need to be folded.

You pick your battles and you set your priorities as you see fit. This is how I've set mine.

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