Looking for Alice

A friend of mine dropped a link on my timeline which is about a mom with a daughter with Down syndrome who has been recording moments in her family’s life with their own Alice.

The title of the Slate story, “What It’s Like to Raise a Daughter with Down Syndrome”. I find this misleading. The Slate posted a relatively small number of the photographs and similarly little to answer that question.

Nobody will answer this question in any kind of useful way since it depends on three things: your daughter, your family, and your community.

I can guarantee that, while there will be commonalities in Sian Davey’s experience and ours, there is so much variance in all three things that things will be divergent.

For example, I will always have haunting memories of our time spent in the NICU post birth:


And the stroke has affected Alice’s ability to follow directions consistently as well as her ability to walk, run, care for herself, eat, and so on.

And although it doesn’t come out directly with the dangerous stereotype of society neither wanting no valuing people with Down syndrome, it does so indirectly by communicating Davey’s fears of those things without ever bringing that to closure, except through the photographs which are limited vignettes of what looks like a typical life (yay!).

Here is a direct link to Davey’s own site with more of an explanation and more photographs.

Where Davey and I agree is that you should absolutely take pictures. Time slips away so quickly and there is magic to capture (but that’s true of every child).






The MDSC Hockey Game

Today was the 10th annual hockey game/fund raiser done by the MDSC taking on the Boston Bruins Alumni. I went with Alice, we’ve been there for 7 of those games.


This is a really fantastic event. It’s great to see the retired players out on the ice getting a work out and having fun with the MDSC team. Before the game, there is a free skate and I enjoy going out with Alice for that. Usually, when I take Alice out to a local rink, we borrow a sled hockey sled with a push bar. I’ve tried (and failed) to teach Alice to skate. She gets terrified by the loss of control and once she’s fallen, it’s nigh impossible to get her back up. Eventually, I’d like her to be able to push herself on the sled, but it’s hard to do one-handed. For this event, we use a chair from the arena and that works great until the ice gets worn, then it’s tiring.

Alice looks forward to the event and really wanted to see Blades. We arrived early to have a sit-down lunch and Alice told me that “Blades is beautiful and lovely and he’s going to marry me.” Uh-huh. Nice use of adjectives, though.

We skated for about an hour and a half and Alice had a good time meeting the players. During the event, she invited no fewer than three of the players to our house for Thanksgiving dinner. I don’t expect them to show up, and it would probably set a poor precedent, but you gentlemen are of course welcome.


Alice and Frank Simonetti and me


Alice and Rick Middleton



Of particular note are Tom Songin (pictured above) who was an absolute sweetheart to Alice, and Alice clearly picked him as her new best friend.

Alice also got to hold Tom’s stick. And when I say Tom, I actually mean Patrice Bergeron, because he had clearly lifted it from him:


Also, Bob Sweeney (not pictured here), came up behind us and said, “Dad here’s looking a little tired, how about a couple of my boys take over?” and his sons (I assume) pushed Alice for a couple rounds before Alice wanted me back.

All in all a fun event.


Nothing To Do With Special Needs – Screw You, Whirlpool

In 2007 or so, we replaced our old washer and dryer with modern, efficient units from Whirlpool (Duet Sport is the model name). The dryer failed early in its life, likely crib death, and had also had a mysterious failure in the user interface control board. The washer developed a leak a few months ago, which a repair service was only able to mitigate, not fix. Not a month later, the replacement UI control board failed in pretty much the same manner as the old one. Oddly enough, the washer and dryer we had before were close to 30 years old and apart from being inefficient and slow, the only breakdown I ever had was a broken belt on the dryer.


I was able to purchase a replacement, but there was a three red flags:

  1. This part was not particularly easy to find in stock
  2. Every place that had it in stock offered a small cash offer for the broken one
  3. The replacement part was exactly the same revision as the original

This to me says that Whirlpool is not likely to keep supporting this part (or at least aren’t manufacturing it), they want the broken ones to fix and put out in the field again and they have had no interest in revving the failing part. None of these are good signs for when the part fails again in another 3.5 years. I found the schematics online and from all appearances (I say this because the schematics are really a block diagram documenting the connections not the boards), the main controller is a relatively puny microprocessor (as it should be) and the UI board is likely slaved to it through a SPI interface. I say ‘likely’ because the labels in the schematics for the various lines appear to match the typical naming conventions for SPI. Unfortunately, this means that there is a communications protocol which would be necessary to implement this properly. I left a note via Whirlpool’s web feedback that I was requesting formal documentation of the communications protocol. To their credit, they called me. I honestly did not expect this.

The woman I spoke to offered to get me a link to their service manual, which I already had for the schematics. I asked again if I could get the communications protocol that they use was told no. I asked what will I do the next time this fails and the part is no longer available? I was told that I would contact a Whirlpool service tech who would diagnose and repair it. I was curt and asked how the service tech would get a part that clearly already at end of life? The real answer is that I need to put aside $10-20 a week for the next 3.5 years to replace the units.

The failure of this part and the red flags above are some of the more compelling arguments for Open Source in design. Being in commercial software, I understand the need for proprietary code and design in order to maintain a competitive lead. The Open Source movement is at the far end of the spectrum, wanting to have all software be available. I think there is a more reasonable middle ground and it is to address exactly this problem: what do you do when your product has entered it’s end-of-life phase? This would be an ideal time to release all this information.

If I were designing this dryer, I would likely make the protocol be something like this

Hey, are you alive? (yup, nope) – this is power on self-test

Hey, what button(s) are currently down? (here’s a list) – this is a horrible protocol, but it’s simple. It might also be ‘Hey, have any buttons been pressed recently?’

Hey, would you display this on the digit display? (yup, nope)

Hey, would you light up/turn off these lights? (yup, nope)

Hey, would you go into sleep mode (yup, nope)

The nature of this is that the main controller sends requests (Hey…) and then the UI responds. This is the nature of SPI which is a synchronous protocol. The master sends a message and the slave responds.

Here is what I would need to reverse engineer this: a logic analyzer ($50-$300) and time. Lots of time, especially if the communications protocol is not straightforward.

To build replacement hardware would be around $100 to use off-the-shelf components (likely an Arduino) and time. Lots of time.

Unfortunately, as the parent of a child with special needs, time is one thing I do not have a lot and when I do have time, I usually don’t have the energy.


Having a Child with Down Syndrome, Part LXVIII: How I’ve Changed

Copyright © 2014 Stephen Hawley, all rights reserved.

You can’t go into the same river twice. I always liked that aphorism. It’s evocative, terse and seemingly deep. For better or worse, the river of Down syndrome has changed us all a great deal. I can’t say that I particularly like all the changes. I don’t always wallow in self-pity, but when I do I go at it full force. Today, I have the start of a chest cold and a raging headache, so I’m going to indulge. When I look in the mirror, I don’t see the face that I expect to see. I see a face that is deeply lined from worry and grimacing in a stiff-upper-lip-I-guess-I-just-have-to-deal-with-this kind of way punctuated by apoplectic bouts of sheer incredulity. I feel like I’ve lost my sense of humor and have to make an effort to remember the muscle patterns to smile.

When I was a younger software engineer, I did an experiment over several months to find out how much sleep I really needed. The answer from data collection was 6 hours uninterrupted indefinitely and fewer hours for only a few weeks before I lose the ability to hear an alarm clock. This data, collected in my mid 20’s, is a laughable underestimate. At this point, I’m not sure I could sleep for 6 hours straight even if I wanted to. Melatonin? Glass of wine? Warm milk? Doesn’t help.

And with this sleep-deprived setting, I need to have more patience, more care, more energy, more foresight. Sorry, but that ain’t gonna happen. I get tired of policing Alice’s backsliding oral motor control. I wonder what’s the point of trying to highlight the “don’t talk to strangers rule” when after 4 years she doesn’t show any sense of getting that. I’m tried of getting openly dismissed, disrespected, and rejected if she believes that she has any other option than me. I’m tired of the constant reminders flush the toilet, wash your hands, wipe your face, pull up your pants, pull your shirt down, use both hands to wash your hair, use your ‘hello hand’ to shake, no he’s not your boyfriend you don’t even know his name, carry one at a time, leave your brother alone, no you can’t watch TV you just hit your brother, I don’t think you want to ride the bus because you’re not even dressed because you’ve been playing for a half hour, we can’t go swimming the pool’s been closed for two months, did you wipe your bottom because it doesn’t smell that way, can you just wash yourself in the tub, I’m pretty sure I didn’t ask for an argument, no we’re not going to watch The Sound of Music/The King and I/Muppet Treasure Island/Frozen/Enchanted again, no you can’t have a sleep over, please eat over your plate because you’re eating berries and they’ll get all ove…crap, another shirt to wash.

I don’t think I want to go in this river again, but I still have to.


DS Awareness Month 2014, Day 31


Need I say more?