Plinth Blog Special Needs Parenting

15Dec/141

Having a Child with Down Syndrome, Part LXIX: Reading Between the Lines

Copyright © 2014 Stephen Hawley, all rights reserved.

Tonight, Alice and I finished up our performances in the Pioneer Valley Ballet's performance of The Nutcracker. I was a Party Adult for 6 performances and Alice was a Holly Tree for two. Alice and I went to weekend rehearsals for most of the autumn and dress rehearsals for "theater week". The Holly Tree role was new to the production this year, which meant new costumes and new choreography. In the dress rehearsal, the dressed Alice in the basement and then helped her up the stairs to the stage. Stairs are always tricky for Alice, even more so at the Academy of Music, which was built in 1891. The stairs are tight and the costume made it more challenging. At the last minute on the performance today, they decided that Alice would go up without her costume and they would dress her upstairs in the wings.

I could hear her complaining and calling for me, so I came over (my part finished) and calmed her down and tried to see if I could get her to understand what they wanted. Alice wasn't communicating well, but my best guess was that they were asking her to do something different than the rehearsals and asking her to do something different than the other girls. I also think that she thought that she wasn't going to dance or wasn't going to dance in her costume. So instead of forcing her, I saw no reason not to put her in her costume and I would help her up the stairs early and we would have plenty of time to wind down. This is especially entertaining because at this point I was halfway out of my costume. I was still wearing formal trousers and shoes, but has nothing but a tank undershirt on otherwise. I also still had my stage make up on and looked comical, no doubt. However, when you are called as a parent, nobody asks you what you're wearing. You just step up.

IMG_20141214_140241539

We waited on a riser downstage and got to watch some of the principals warming up during intermission. Alice got to see the stage when it was completely lit and got to see the dancers doing their thing. She talked to several of them, introduced me and asked them what their favorite character in the Nutcracker was and who they played. Alice really liked Mother Ginger. Mother ginger is a character (usually played by a man - bonus if he has a beard) in an enormous skirt which is hiding several children playing polichinelles. They come out from under her skirt and dance then run back under. Her skirt was in the far wing, hoisted up on ropes out of the way.

As a reward for her calming down and getting ready, I walked her down the main stairs on the riser onto center stage and danced with her for a minute while the rest of the cast gathered. We got her star prop, and I watched from the wings as she got set and did the opening dance with the gingerbreads. She did a wonderful job and I got the added bonus of having the best view in the theater. Alice's mom thought she looked angry, but I knew from having 20 minutes of time with her that she was anything but. She was focused and intent on doing her part and doing it well.

We had a minor issue afterwards. Alice and I both had a second performance, but Alice decided that she was done and had pulled out her bun and got changed. I had her change back and took her to the makeup table and asked one of the staffers who I knew had a daughter in the company to put her hair back in a bun. Alice doesn't like having her hair done by anyone and she went into an angry screaming fit. I reminded Alice that this was the consequence of her choice of pulling out the bun and that if she had asked me beforehand, I would have told her to keep it in. The makeup volunteer was having a lot of trouble with the bun, so I took over and let Alice focus her anger not on me (for a change) and did up her bun as best I could and got her ready for her second performance. I once again helped her upstairs and spent intermission with the principals.

Her second performance was not as good as the first. Alice was clearly tired and her concentrating was flagging. Still, she finished it well.

IMG_20141214_182914074

Afterwards, I took her out on a date to a nice restaurant for dinner and introduced her to a Shirley Temple. We ate and headed home to bed.

The really fantastic thing is the Pioneer Valley Ballet. The Nutcracker is an immense performance. The cast is a small army of people who need to get checked in, into makeup, into costume, on stage, off stage, out of makeup, out of costume, and checked out. For younger kids, this is an intense experience. Older dancers frequently have multiple parts. Dramas abound before, during, and after every show. PVB doesn't have to make ballet accessible to Alice. Yet they do and Alice thrives in the environment. Yes, she had some trouble - had they asked, I probably could have helped prepare her better for the procedural change, but everyone was flexible and everything worked out fine in the end.

I will also note that during dress rehearsal, E was doing makeup and she finished right when Alice was on stage. We watcher her on a TV they have in the basement of the theater and we both had a moment of not knowing which Holly Tree was Alice. For parents of the girl who is so different from her peers, it was so nice to have the moment and recognizing it.

 

Filed under: Uncategorized 1 Comment
27Nov/140

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:

DSC00024_7

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).

349613768_dcfbb45633_o

406700355_0cc882ee25_o

477226461_468e186d17_o

485497716_796937517f_o

Filed under: Uncategorized No Comments
24Nov/141

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.

15244101963_b1e3a285dd_o

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.
15244101363_07f6fe444d_o

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.

15861764521_71c8d4c892_o

Alice and Frank Simonetti and me

15677742799_b6bbdc6258_o

Alice and Rick Middleton

15863755975_4c670cb9af_o

 

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:

15863123142_da995ab897_o

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.

Filed under: Uncategorized 1 Comment
7Nov/140

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.

controlboard

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.

Filed under: Uncategorized No Comments
2Nov/141

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.

Filed under: Uncategorized 1 Comment
1Nov/141

DS Awareness Month 2014, Day 31

Hallowe'en.

Need I say more?

15056943104_245a82ed31_o15491014189_377b6f2579_o15674942621_febd1e4ff6_o

Filed under: Uncategorized 1 Comment
30Oct/140

DS Awareness Month 2014, Day 30

Not every moment is a joy. Not every day is happiness. When someone tells you that kids with DS are always so nice, I cringe because I frequently get days like today.

IMG_20141030_082309540

You can see that Alice is not happy with me. She went upstairs after breakfast with plenty of time to get ready for school. I checked on her with a 25 minute window of safety and found her in her room in her pajamas in bed with the lights out. I told her what she was doing and what she needed to do, how long she had to do it and the consequences. She stared at me. I went through the recommended behavior script, "Alice, you're in bed staring at me. You need to get dressed." I got a gasp as a response. She hadn't moved. "Alice, you're still staring at me. You need to get dressed. Now." She finally got herself in gear. I checked on her with 10 minutes, which if she is close to ready is enough to get the rest done and get to the bus stop. I knocked on the door and she was half dressed. "Alice, you're not dressed, you haven't brushed your hair, you haven't brushed your teeth. We can't make the bus." Her response, "I want to ride the bus!" which is Alice's stock response when she's going to lose something she likes as a consequence. I spelled it out for her, and got interrupted every time with "I want to get dressed!" "I want to brush my hair!" "I want to brush my teeth!" My response, "Stop. Just stop, Alice. If you wanted to ride the bus you would have done these things. It was your job, you didn't do it. No bus today." She caught an earful from E too. Her response to that was to look at me and say, "Mommy was RIGHT!"

She fought through the rest of her jobs, including putting on and zipping her hoodie (!! hooray - she got praise for that) while E and I hashed out who was going to get the task of bringing in Little Miss Grumpy Pants. Alice, on the way in, told me in no uncertain terms her feelings, "DADDY, I VERY SAD AND ANGRY AT YOU!" "I'm OK with that. I'm angry too." "At me?" "No, Alice, I'm angry with your behavior." I try to draw the distinction between child and action, although I suspect most of it lost. Alice now dropped into a mode where she repeated the topic of every sentence I said with as a question.

"Yes, Alice, I'm angry with your behavior?"

"My behavior?"

"Yes, how you acted."

"I acted?"

"When you were still in bed in pajamas."

"I in bed?"

And so on.

I got her to school, brought her to the office and she spoke to the secretary.

"Hi."

"Good morning Alice, how are you?"

"I not having a very good day."

"Why is that?"

"My behavior." Innnteresting. Maybe it does sink in more than I thought.

Alice went on, "I need you call the police." (I translated. The secretary was having trouble understanding Alice).

"I need you call the police. ON DADDY."

One thing they're starting in Alice's curriculum is how to use the phone in case of emergencies. I fear for this lesson because I think I'm going to have to explain to the police that, no I don't think they need to intervene because someone failed to earn TV time for not getting ready for school on time, but go ahead and have a talk with Alice.

Absolutely, people with Down syndrome feel the range of human feelings and life is not all smiles and laughter. Let's put that stereotype into the ground, please.

Filed under: Uncategorized No Comments
29Oct/140

DS Awareness Month 2014, Day 29

image

Alice and I both wore our new Buddy Walk shirts and dark zip hoodies today. We match!

Filed under: Uncategorized No Comments
28Oct/140

DS Awareness Month 2014, Day 28

image

Alice invited Olivia to share her book with Alice.

Filed under: Uncategorized No Comments
28Oct/140

DS Awareness Month 2014, Day 27

Literacy is so important for anyone in our society. If you can read and write, your life becomes easier and more independent. We look for literacy all the time and at present, Alice loves reading and is at the stage where she will read every sign that she sees. Today she got a Halloween card from her grandparents and didn't hesitate reading it. It's cute that she chose to read "Happy Birthday" instead of "Happy Halloween".

Filed under: Uncategorized No Comments