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.
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.
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.
Ed: Yeah. No disrespect or nothing, but like how long is this going to take?
Master: Tae-Kwon-Leep is not a path to a door, but a road leading forever towards the horizon.
Ed: So like, what, an hour or so?
Master: No, no. We have not even begun upon the path. Ed Gooberman, you must learn patience.
Ed: Yeah, yeah, patience. How long will that take?
I took my kids to a movie today and met up with a friend of ours and her son. I think for both of us parents it was to get some respite. Yesterday was an 18 hour day and I figured I'd probably get at least a half hour nap during the film. Alice, of course, was very excited about the movie and grabbed her purse because she wanted to get popcorn and a soda. Like many other things, I tried to make sure that this experience would be as independent as possible. This means that Alice does all the talking and has to respond to the questions and does as much as she can without depending too much on me.
The other parent remarked to me that she was impressed at how patient I was with Alice. This stopped me cold and I couldn't really respond to it well as I've had very little patience with Alice recently, so I did my very best to deny the compliment or at least write it off as routine.
And because I overthink things a lot, I tried to figure out where my patience actually was in this. A lot of what I was going on was steps and scaffolding that we have done for years with Alice, but I think where my patience was today was not with Alice but instead with the young man working the register at the theater. Alice, more or less, knew what she had to do. He knew what he had to do, but not in this context. So instead of really being patient with her, I was instead patiently training him to work with Alice in this transaction. I made eye and head motions to direct his attention to her and not to me and to ask questions to her and not to me. At one point, I said directly, "this isn't my transaction; this is hers." to refocus him. It all worked out well. But I'm pretty sure that my patience was with him and not with my daughter. Or maybe it's just patience disguised under familiarity with Alice. I'm not entirely sure because, after all, I wasn't firing on all cylinders and was still looking forward to my nap.
So yeah, patience? Can I get that now?
Alice has been having an challenging time taking a shower in a reasonable amount of time. We made a decision last year that as a teenager, Alice should take a shower every day. Alice clearly doesn't want to do this and does everything that she can to drag the process out. This past week, she set a personal record of taking two hours to get through the process and that's with repeated reminders from us to get on task ("OK, OK! I doing it!"). We had tied success in getting the job done tied to an activity after showering. Nope. No good.
After that night, E&I both decided that we've had enough of that nonsense, so we tied her performance to a food reward, since recently Alice has been thinking mostly with her stomach. I don't like using food as a reward. I really don't, but 2 hours in the shower? No. Just no.
And for the record, what's up with this? Clothes scattered on the floor, door open, and she's in the shower. Well, 1 out of 3...
This morning started with conflict between me and Alice. Alice has a big problem with impulse control. If she sees something that she wants to touch, even if she knows that she shouldn't, she does. This is a perpetual problem and we haven't had a lot of success with it. This morning, Alice went into her brother's room. I noticed that his door was open instead of closed and let him know that I was going to close it. Before I could get to the door, Alice came out looking tremendously guilty. Time out-ularity ensued.
I should point out that at this point in Alice's life, she spends a lot of her time-out yelling at me. For the most part, I believe that this is a tantrum and that a tantrum loves an audience, so I usually let it go, but this is also at odds with my belief that Alice should be allowed to make a choice in the matter. If she keeps up with the yelling, her timeout will last longer. I let her know once, twice, OK fine, at this point this is on you, Alice.
Finally, she took her timeout and was released. She came down and I was working on our menu. While I was doing this, she took out a cookbook and put on an apron and let me know that she wanted to make cheesecake.
Not this recipe. Lime cheesecake on the next page. Huh. My immediate reaction was to say 'no' because of how she acted this morning, but she was showing a fair amount of initiative, so I decided to reward that. I sat her down and put the menu in front of her and we started doing a new thing. I started showing her how to make a shopping list from a menu. We looked at each item and went through what we needed to make that meal and added the items to the list. Then I pulled the cookbook out that she had grabbed and started going through each of the ingredients. Alice read them and then spelled them for me. I didn't ask for that. She did that on her own. Nice! I also asked her to pick things from the global shopping list to put on her shopping list. That also worked out well.
In the store, I got one of those nice parenting moments. Alice went to the deli counter and ordered some cheese and after she got it, I heard her say to herself, "Nailed it!" as she put the cheese in the cart. I had to turn my back so she didn't see me laughing.
Once we got home and after I put the groceries away and we had lunch, I set up a mise-en-place for the cheesecake and we got to work on it.
This is Alice putting in an egg into the custard. It's not a complicated recipe and that works well for her. Most of it is "dump and mix". Through the process, as much as possible I had Alice read the recipe and the instructions so she knew what was coming up next.
It was not an ideal cheesecake (it was really made for a 9" pan, not a 10" pan, so it was a little low and a little rubbery), but it was all the more satisfying because of Alice's pride in doing it. And this is the benefit for trying to say 'yes' in a situation when you really want to say 'no'.
First bit (not about self-care), I had given Alice a snack today after school: her usual, corn chips and guacamole, or in Alice's words, "broccoli-moley". I had turned my back and Alice grabbed a tangerine, peeled it and ate it. Now, if you've been reading this blog you know that Alice had a stroke and her right hand doesn't work so well, especially fine motor. Imagine trying to peel a tangerine under those circumstances. Right. Hunger is quite the motivator.
When we set up Alice in her room in this house, E set up an Ikea desk and vanity complete with a caddy for personal care items including a hair dryer. E taught Alice to use the hair dryer, but Alice has trouble doing that independently. She dries her hair on one side really well and the back and the stroke affected side not so much. She also holds the drier right against her scalp, causing herself burns. Seriously.
So what do you do? Change the technology.
E picked up one of these older hair driers and Alice is doing fine with it. It takes her a little longer, but that's not a bad thing.
Every step helps her get better at taking care of herself on her own. Now if she could only take a shower in under 45 minutes.
Alice is a very touch oriented child. She seeks touch as a constant reward and doesn't follow social conventions for personal space, which is a constant uphill battle. School has done a good job of substituting high-fives for hugs and has gone a long way to help educate her peers as well so that the boundaries are firmer.
In a similar vein, Alice and I have our own "secret handshake" for accomplishments. It goes: high-five, knuckles, elbows (see above), shoulders.
It's goofy, but I like it for that very same reason.
This is one of those times when I'm not sure where to put this. Should this go here or should it go on my technical blog? I made a choice to keep them separate because I figured that people who came looking for special needs information would likely have no interest in software issues and those interested in my meanderings on software and programming would glaze over at the special needs parenting things.
Yesterday, we went to see Hidden Figures, a historical drama that covered a window of time of three African American women who worked at NASA at a time when a computer was a person who did computations. The three women, Katherine Johnson/Gobel, Dorothy Vaughan and Mary Jackson, all took different steps to success within NASA, each encountering race barriers along the way.
I very much wanted to see this movie for the history aspect of people who helped shape the foundations of programming and the software industry, especially by those who aren't in straight white male group that currently predominates (for example, Alan Turing and Grace Hopper). In this way, the movie disappointing. It presented Katherine Johnson/Gobel as knowing analytical geometry, but soft pedaled the math. What I saw being shown as "math in action" was not more than algebra or pre-calculus and I can get that on sight, I'm thinking they skimped. And yes, coding is not the most interesting thing to watch, but rather than a few brief lines about FORTRAN, it would have been nice to see some of the actual process that includes creating and verifying the code to do flight dynamics. Still, beggars can't be choosers and the bigger picture in this movie was how badly people of color were treated in a US with segregation. In the words of Dorothy Vaughan, "I changed what I could, and what I couldn't, I endured."
We went as a family along with a friend of Alice's from school and her mom. Alice sat next to her friend and I don't think she was getting a lot from the movie and was a little bit bored. At one point to add historical detail to the story, there were brief period clips from news interspersed. At one point, I heard Alice say, "Martin Luther King!" and yes, sure enough there he was.
This morning, I asked Alice who he was - what did he do?
Alice straightened up a little bit and said very deliberately, "I have a dream." I gave her a big hug.
And I couldn't be more proud of her and of her school.
I have a dream, too. I have a dream that people will judge my daughter not by their assumptions and her disabilities, but by the size of her heart and her capacity to love. I know that many of her peers in school already do that, and I'm proud of that too, but I'm worried when the president elect of the United States has openly mocked Serge Kovaleski and has nominated Jeff Sessions for attorney general, who among his long list of short-comings, disparaged the value of IDEA on the Senate Floor by saying “We have created a complex system of federal regulations and laws that have created lawsuit after lawsuit, special treatment for certain children, and that are a big factor in accelerating the decline in civility and discipline in classrooms all over America. I say that very sincerely,” (see also this recent Forbes article). He is, of course, wrong, but his words and his opinions are dangerous to the thousands of students with disabilities who deserve a free, appropriate public education.
Alice is not so good at math. She hates doing it to the point of pretending to be unable to do in order to get out of having to try. It's going to seriously limit her ability to be independent. As such we try to focus on practical math. What is it that can learn to do that will help her out on a day to day basis? Once again, enter our friend the grocery store (see here and here).
I've been putting some things on her list for which there are multiple choices and we've been talking about which costs the least. This past weekend, I put "cereal" on her list and Alice picked out Rice Chex (her current favorite), and did this completely on her own:
Yup - that's right. Price comparison. All on her own. I was very proud of her.