Having a Child with Down Syndrome, Part XCIV: It Takes Longer

Copyright © 2016 Stephen Hawley, all rights reserved.

Alice had another Social Studies assignment related to Central America. This time, they wanted her to send in a recipe for a food from Mexico. Fortunately, many of the typical foods are or can be done gluten-free. The trick here is to pick a recipe that is traditional and simple. I did some pre-investigation and offered  corn tortillas as an option for Alice. She was excited about that so we watched a few YouTube videos on how to do it before settling on one that was appropriate and we worked on transcribing it. It was clear that Alice wasn’t really listening to the woman presenting the recipe because I had to go back over some sections seven or eight times before she listened to and heard the actual instructions to recall them.

After I wrote down the ingredients and instructions, I had Alice type them back in.


Alice is a hunt-peck typist and this process is slow, but in theory it would help her internalize the recipe more. Alice was starting to do more consistent two letter chunking so it didn’t take too long.

Then we got to work making the dough for tortillas.


Alice enjoyed the tactile sensation of the dough, but I had to finish it up to get it to hang together.


We made a test tortilla and it came out very well. I’ll cook the rest before school on Thursday when they have to go in for a fiesta.

Mental note: making corn tortillas from scratch is super easy.

Alice’s recipe:

Corn Tortillas

1 cup masa flour

1- 1 ½ cup water

pinch salt

put flour in bowl.

Add salt and mix.

Add 1cup water and a

little bit more.

Knead the dough until

all the lumps are gone.

Let rest for 20 minutes.

Make into 8or 9 balls.

Press flat.

Cook 1-2 minutes per side.


It takes longer to this kind of work, hopefully it’s worth it. One never knows in the moment.


Having a Child with Down Syndrome, Part XCIII: Hard to Accept

Copyright © 2016 Stephen Hawley, all rights reserved.

This blog is difficult to write and it’s likely that it will be half baked, so take the content with a grain of salt and accept that I’m writing this and the entire blog while we’re at it to help codify my thoughts, understand my emotions, and provide a reference for other parents in the same boat, although the last is a distant third.

One of the things that happened with us early on in Alice’s life was that we spent a lot of time trying to kindle hope in the face of the trauma of having a baby with multiple disabilities. This process was necessary. Hope is what provided us with the strength to face an unknown and manage to get through the early intervention, the therapies, the oxygen tank, the medications, all on top of being first-time parents.

Now, nearly 13 years later, I’m looking at Alice with an eye towards what was her long-term future when she was a baby, but is rapidly becoming her near-term future. I look at her behaviors and her abilities and I’m starting to lose hope. Alice has a number of problems that stem from the stroke she had as a newborn. One of the problems is her executive functioning, which is hampered by damage to her frontal lobe. Alice has very poor impulse control and no amount of positive or negative feedback has changed that. Alice will still touch people inappropriately, play with things that are not hers, fixate on things, ask the same questions dozens of times, and so on.

Looking at that and the trajectory of her maturity, it is getting harder and harder to imagine her living an independent life. It’s hard to imagine her holding any kind of job without a job coach. It’s hard to imagine her having a meaningful relationship.

It sounds like I’ve given up. I haven’t. It’s just that I’m trying to figure out what the realistic options are and how to frame a future for her that will be fulfilling for everyone.


Having a Child with Down Syndrome, Part XCII: Homework Modifications

Copyright © 2016 Stephen Hawley, all rights reserved.

Two jobs ago, I was a teacher in the smallest school district in Massachusetts. I came in from “industry” as a software engineer and tried to be a quick study in terms of technique used in the art. The district’s low-budget computers routinely had issues and one of my many jobs was to bounce between classrooms fixing them. During these times, while I was waiting for machines to reboot, run diagnostics, or install software, I made a point of observing techniques that the teachers used and to steal what worked and do my best to avoid what didn’t. One thing that I saw was how teachers modified curricula on the fly for students with different skills.

When Alice gets any kind of homework assignment, I look it over to see if there are modifications built in and then given the assignment, I try to find a way that meet the goals of the assignment with the greatest educational benefit to Alice while minimizing roadblocks.

Alice had an assignment to create a travel brochure for the Latin-American country assigned, and in her case, Mexico. The teacher had made a fine rubric built into the assignment sheet which indicated the parts for which Alice was responsible. Yay! I looked at the overall goal (make a travel brochure) and broke it down to the actual goal: learn some information about Mexico and communicate it in a way that might entice someone to go to Mexico. My solution was that instead of making a brochure (which would involve Alice spending most of her time figuring out how to make a brochure) to making a series of web pages about Mexico, which instead would involve Alice spending most of her time transcribing her notes about Mexico into web content. This, in my opinion, would honor the real goal of the assignment by giving Alice a chance to read and repeat the facts several times and practice typing instead of trying to put together a brochure. I did the “hard” parts of putting in the images that Alice picked and ensuring that the pages all linked up.

Alice liked the process for the most part, although at the time of day we were working on this, she was clearly struggling to maintain her attention and required a fair amount of redirection. And then instead of killing trees, we emailed in a link to Alice’s work.