Raising a child with special needs is a challenge. To help deal with this challenge, there are many heroes who come forward and rise to the occasion, making sure not only is the child supported but the family is well. People in person generally rise faster than organizations on the phone or by email. And there are many heroes from the medical field, social services, friends, and family.

However, it has been my experience that there are days when the obstacles just happen. I try to remind myself that these rarely happen intentionally, and are more likely to be caused by some combination of incompetence, forgetfulness, and simple human error.

So that is the prelude to the frustration of trying to get a UTI test for my daughter. My daughter Eva is a survivor of encephalitis and requires 24-hour nursing care. She is blind and suffers from cerebral palsy and uses a tracheostomy for breathing support. She is the definition of an immunocompromised and vulnerable person.

Having suspected a UTI, her doctor, one of the heroes, delivered a specimen cup so that we could collect urine via a catheter to confirm the suspected infection. The nurse was able to collect the sample in the early afternoon so I quickly left campus after making arrangements for colleagues to cover my classes, another set of heroes.

I arrived with my sample at the first LabCorp nearby at 2:15 but found the door locked, even though it was clearly marked on the door that the facility closed at 2:30. After calling my wife to vent a little frustration, I found another LabCorp that was further away but would be open until 3:30. Arriving in the parking lot at 3:15 and with help from a nice mall attendant I found the LabCorp at 3:20, again with the door locked. However, this time I could see the worker in an office room ignoring my knock and going into hiding. The attendant saw as well.

So, after about an hour of driving and two attempts to submit the urine sample for testing at two different LabCorp offices, we had to dump the sample. This implies that not only have we wasted an hour of my time, but we have to again subject my daughter to a catheter which is uncomfortable at best and a potential source of the infection itself at worst.

I try to tell myself that no one is intentionally trying to make this harder than it needs to be. And sure, sometimes people need to leave early. But the fact that this happened twice in the same 60 minutes and that I could see a person hiding from their responsibility … Well, this was going from unfair and into the wrong category.

I would bet that every family has a frustrating day, but every family with a vulnerable family member in need of special arrangements has more and more challenging events like the one I described today.

So, I want to leave you with a motivation to stay a little later, to reach a little further, and try a little harder, especially if you’re trying to work with a population that’s in greater need than the average. It doesn’t really take much to be a hero, sometimes it’s just showing up and staying and completing your shift — basically, just doing your job.

So, 90 years ago on this very day in the city of Philadelphia my mom arrived on the planet. Sadly, she left the planet 29 years ago on almost the same calendar day.

Which implies that I am now the same age my mom was when she died. She was an amazing lady which is something everyone is required to say about their mom. She raised four boys to become men, and survived challenges and obstacles that would have defeated many people. I like to think that she just ran out of gas after surviving adversity. Everyone knew then she was amazing.

Almost 30 years later, I am approximately at the same place having raised five children to become young adults. I would argue that my family members have faced more adversity than I did directly, but the indirect consequences have been something I’ve needed to navigate.

At the same time however, I now realize that my mom was way more than amazing. With an incredible combination of intellect, humor, and savvy, she set a foundation for me to live a life where I get to work with a community of scholars and budding professionals. Heck, I even get to bring the guitar that she gave me when I was 20 years old to work.

That guitar saw me through years of schooling, and my brief but wonderful career as a semi-professional musician. To this day that guitar is part of my ongoing music therapy.

During this pandemic, I have offered to share this gift of music therapy online, with a few takers. Indirectly but substantially, all of this starts with the lady whose birthday is today.

In 1990, for her 60th birthday, my brothers and I did two creative things that I remember to this day. The first was we hid 60 bottles of Miller beer around her apartment. She enjoyed stumbling upon these bottles throughout the last year of her life and calling us, letting us know that she discovered another bottle in a drawer, cabinet, or under the sink in the bathroom.

The second creative gift I spearheaded. I took that beautiful Sigma guitar and wrote a song to the best of my ability captured the essence of my mom. She always reminded us that she was Czech (and not Czechoslovakian), where she learned to be thrifty, strategic, yet loving.

So Happy Birthday, Mo Dougherty, and save a spot for me and your son Patrick at the “kitchen table” as we watch you argue and laugh with Aunt Pat, Tim, and Mike.

After a blog post from years ago, prior to the 2016 election, I supported Hillary Clinton but would give a Trump presidency a chance. Although I would be disappointed, I was willing to work for the better of the country in the long run.

I still have the same feeling, I am thinking of my country. For that main reason, for the future that includes my children, I must insist that this presidency must end as quickly as possible. There have been many volumes written about the absurdity, conspiracy, incompetence, and the genuine evil promoted by this administration. I will site a few now but please remember this list is not exhausted and will probably be outdated as new catastrophes emerge hourly.

• Immigration issues at the southern border, separation of families, children and cages and concentration camps
• Emoluments
• Financial malfeasance
• Conspiracy and obstruction of justice as outlined in the Mueller report
• Lying
• Fighting science and fact, promoting short-term beliefs and political considerations over the long-term good of all
• Nepotism
• Supporting authoritarianism
• creating virtual dumpster fires and then bragging for putting out that same fire
• Cheating on his family and an entire country
• Hubris
• And arguably the worst, hypocrisy (e.g., golfing)

A more recent and complete list is provided here by David Leonhardt.

I am proud of the title of this post as I think it captures my disappointment in the current president in so many dimensions. Firstly, it is ridiculous that this man is president of anything, let alone a country as great as the United States of America. From what I have witnessed, I would not trust this man with a goldfish.

Next, moron is contained in the last word and conjures up the appropriate image of not just a dumb person, but someone who thinks they’re smarter than they really are.

Lastly, that same word also contains ox, which conjures the image of a large brainless brute who bullies their way through their own incompetence.

It is always upsetting to see people rewarded for bad behavior. This is also a reminder that democracy is not a perfect system that is just better than all of the others. It is the approximation of the best by using the popular, and he had demonstrated here people can be confused, often conflating competence with confidence.

Presently many people are pushing for impeachment hearings to start. Others suggest waiting until he is voted out of office where he can then be in prison. I believe the best approach is to do both, begin impeaching hearings as well as continue to gather evidence so he can be prosecuted once he leaves office. I would also add that as soon as possible the policy to not prosecute a sitting president be eliminated — no one should be above the law.

Blame also goes to the Republican party for tolerating this behavior and enabling these bad outcomes for short-term gains.

Non-voters and those who simply do not participate in the process are also to blame. People need to prepare and to vote.

Finally, there is blame left for the Democrats who for decades chose civility over patriotism.

One should avoid any oxymoron, especially this one.

PS: Today, House Judiciary voted two Articles of Impeachment — here’s a list of GOP/Trump defenses and why they are wrong/silly.

I started my professional life working to engineer efficiency, often using parallel computation, and often by balancing resources.  And balance, “on balance,” has many advantages, see the previous post.

Then came Eva.

Eva was born about twenty years ago, a redhead on St. Patrick’s Day (following her mom, born on Christmas Eve).  Two weeks old and suffering seizures from a viral encephalitis.  There was no time for balance, for a measured approach.

Eva survived, and unexpectedly given the research I could find and understand.  It has been an exhausting amount of work, and more than a child without issues like CP, cortical blindness, seizures, reflux — eventually other issues would arise such as low platelets, scoliosis, and respiratory challenges.  In terms of disability, Eva is in the extreme of the extremes (save for the few with even more issues, they exist, and require even more support).

In trying to make lemonade from lemons, I have worked recently to pivot into accessible computing research, broadly defined.  This transition all took place as we in CS @ Haverford explored test-suite driven design to teach introductory courses and programming.  In both instances, we are forced to consider the extremes to generate solutions that apply to as large a universe of circumstances/problem instances — i.e., “universal design.”

There is a popular image entitled, “Clearing a path for people with special needs clears a path for everyone,” that gets at the point of universal design, and can be viewed at this page on UDL.  I suppose it is understandable that designers initially thought of addressing for the most popular users (i.e., “non-disabled”) since about 90% of the world’s population reports no disability, and those designs might be easier and quicker to implement.  However, the remaining group of users with disabilities is huge in the absolute (about 650 million people)!  And as the ramp clearing image demonstrates, addressing issues of access for people with disabilities, if done thoughtfully, also provides access for the majority as well.

I am not saying that extremes are always good — c’mon, think of the recent hurricanes in Puerto Rico, Texas — but thinking about extremes in design might have helped mitigate the degree of disaster.  Extremes happen, and one should be prepared, including how to handle extremes in one’s own life.

Thus, I would now say that I am pivoting into “universal design” — in pretty much everything.  Universal access does not imply balanced access, but that is the topic for a future post.

People generally appreciate a sense of balance in many things, or perhaps better to say they are suspect in the extremes.  As I get older I appreciate this heuristic, this more nuanced and complicated way of looking at the world.  In my basic research in parallel computing, scheduling processes “in a balanced way” can equally utilize the available resources and often get the job done most efficiently. A nice, intuitive result.

Recently the economist Thomas Piketty has received praise for his book, Capital in the Twenty-First Century.  I am not an economist, but my understanding is that he provides a detailed model of financial inequality, with substantial data to support this model.  Of course, there are those who have issues with this work, but my sense is that this work is generally accepted as accurate and contributing.

The simple answer proposed is “wealth redistribution” to make things more equal.  I do not think this is the way to go for many reasons such as the wrong incentives, “punishing actual good behavior,” and others.  I also want to note that my instinct tells me to be careful of such a simple answer; the most effective options are often the hardest (but most worthwhile).  I do support some tax policy changes to incentivize wealth from actual worth as opposed to simple inheritance-based wealth.  I really like Warren Buffett’s take on this issue.

I leave taxes as a solution at the policy level; the mechanisms are beyond my understanding or abilities, but they are important and I hope all government, financial and economic leaders dive in deeply here.  What I do know a bit about is the role and impact of education, both personally (i.e., anecdotally), and professionally.

That’s why I was glad to see Fareed Zakaria’s piece on the potential role of education to impact inequality.  It is an idea I have thought and felt personally, and believe in professionally.  I am the only kid in my family to attend college (my dad did complete college after his military service), and I attended college “to the extreme” (yes, I see the irony here :).  I think it is safe to say that my education did provide more of an opportunity for financial stability/success than my siblings, all brothers (another extreme).

My personal beliefs aside, there is evidence of this correlation between education and success.  Employers, especially in tech, complain about a lack of skilled workers.  There is data and research connecting resources invested in education vs. those spent on imprisonment (dramatic, yes, but thought-provoking).

After a few years I have decided to forgo the website where I work, and make this my landing page, and move the Blog away (and linked) from the landing page — stay tuned, I have much to learn about WordPress.

From my previous post, one would be correct to expect my disappointment in the election of Donald Trump as President of the United States.  There are too many issues to discuss regarding the reasons for this surprising outcome, but for now, I want to share a quick note prompted by a post at the college where I (proudly) serve.

Haverford College, a historically Quaker institution, promotes social justice, including diversity, inclusion, access, and protection of vulnerable populations.  The President-elect and many of his appointees and supporters do not seem to follow the same plan.  In fact, there are many examples to the contrary.

I am proud (again) to share a statement from Haverford College in response to the current “climate change” that appears be occurring in our federal government.  I feel saddened that the College felt the need to provide such a statement, but glad it did.  I only hope that the people in power hear it, consider it, respect it, and remember it.

I am proud of my country and my college now, including the federal government — I do not agree with everything (e.g., drone strikes), but impressed at the competence, temperament and overall direction of the current administration.  And I want to remain proud in the future, I really do.

It’s September 2016, the US election for president and other offices (including senator where I live, and yes, a swing state) is two months away, no debates yet but the poll I trust has HRC at 60%, Trump at 40%, trending closer as HRC had a bad weekend and Trump continues to surprise.  As a voter registered independent by choice, I try to look at policy and other statements made by the candidates, and make my choice on Election Day.

This approach has been hard to maintain given the disparity I sense between the two major candidates (yes, I know about Mr. Johnson and Dr. Stein, but I am not considering them in my discussion as they are not going to win; they may impact who does win though …).  I do not want to even try to speculate why someone would support Donald Trump — for anything.  All evidence indicates that he is not really capable of, nor interested in, “Making America Great Again.”  In my experience, someone who speaks in the manner he does, spewing verbal diarrhea at often the most vulnerable, is not worthy of anything but the most minimal of respect as a fellow human. So, no, I will not support Trump for President.

That leaves me with HRC, who has the credentials of a presidential candidate — education, experience, and intention.  I do find some of her (and her husband’s) decisions “not well considered,” and each mistake amplified by the innate instinct to hide it.  So there are trust issues (like with almost all politicians), but the Clinton’s issues look like they will remain even if she is elected (i.e., if she hasn’t learned by now …).

Still, the contrast is stark.  I just want my kids to know where I stood before the election.  I support HRC for president using logic first proposed by P.J. O’Rourke (you should read it, it’s funny). And no matter what happens, I will support the president until she or he does something that deserves my support of removal from office.  I also just saw this offer from Mark Cuban to have Mr. Trump explain the substance of his policies, that would be something to see.

BTW, I am now using the term “Trump gift” whenever I am given something intended to go to another person, and when I give it to them I take credit (e.g., “buying” a drink for someone from the open bar) — use it if you’d like, it’s my gift :).

Let me demonstrate, as I share this with you like I did it (but I did not): Here’s a creative way of expressing a political view, a four-minute video of a song entitled, “Seriously.”

OK, okay, I know it’s been too long, but I was busy (I know, just like everyone else) — I wanted to only post commentary here when I had something to say of merit; I neglected to include the needed space and time to compose my thoughts and generate a decent post.  So, I want to go on the record on a few points from the past year (or more), so that in the future, I can either state, “Hey, I told you so,” or figure out how to remove this post (kidding).

• Donald Trump is providing a service to the American political system and perhaps to the world — in computing we call it “extreme test cases” that often bring to the surface omissions or errors in the system.  I am not sure, but I suspect it is just inherent to the idea of “majority rules,” that it is a practical substitution of the popular that is easy to get for the optimal, which is harder to achieve.  Fortunately, the system is dynamic, so there is a chance it will react in time to avoid whatever lies ahead or else adjust to it.
• The whole Bill Cosby issue that (finally) surfaced show more system problems.  Not sure how to repair that one.  I suspect it will take a multipronged approach that may include empowering/encouraging/supporting women to ask for help (i.e., whatever they need), identifying such abuses earlier yet still balancing the old “innocent until proven guilty” maxim, and others I do not yet see.
• I just saw the 30 for 30 episode about the Duke lacrosse team and the Durham, NC DA Nifong, and I must say that false accusations scare me.  I am a big believer in fairness, so I want the bad people to stop and be punished appropriately, but I want the innocent to avoid false accusations.  It seems society swings, initially ignoring reasonable reports, then overreacting, then swinging back…
• I would like to be happy, or better yet, happier — my country, the USA, now ranks 13th, and Denmark is first, a country I did get to visit a dozen years ago and I can see why even though my visit was brief.  Perhaps is correlates to its relatively low inequality, another hot-button issue for me.

All for now, thanks for reading, and I will try to make more timely posts, and reflect even more before posting.  I appreciate your reflecting first before posting or commenting, but please feel invited to comment.

First, the hiatus from blogging — I began posting while on sabbatical leave, time is a precious resource, and there are growing drains on it — yes, just like everyone else.

I have heard the expression, “You cannot be a parent and a friend.” I do not agree with it, but do believe that the friendship I am cultivating with my children is different than my other friendships (see here).  The difference that seems to surface all the time is maturity, decision-making, “seeing the long term.”

They will all soon have bicycles as all are teenagers.  I want them to develop independence and confidence, I want them to be able to make some choices about where to go next, especially now that it is summer.  I also want my wife/their mom to decrease her time in the “shuttle van” (more on that another time).

I need the kids to wear bike helmets. Always.  The rewards are not worth the risk. Some evidence/links here:

• NHSTA
• CDC
• Bicycle crash survivor credits helmet for saving life, Jon Humbert, komonews.com, Published: Aug 10, 2012
• “My Bike Helmet Died to Save a Life” says NY Bike Accident Lawyer, James Reed (I concede it is promotional)
• Ryan Smith’s first words after cycling accident without helmet, bbcnews.com, 2013
  • Seriously injured cyclist, 16, did not wear helmet because he ‘did not want to mess up his hair’, The Telegraph
• Do bike helmets really save lives? Story of a rider whose friends falls without a helmet, is injured, and a followup with the injured rider after three years (still not working, …)
• Young Brains of China Project — where few wear helmets relative to western countries, and “China has eight times more bike accident head injury fatalities per rider mile than western countries.” (NOTE: fact not cited anywhere but this page)
• Comparative Pie Charts showing impact of helmets on safety outcomes in Michigan

And I did try to find opposing views:

• Why it makes sense to bike without a helmet, by Howie Chong
  • a thoughtful piece where the author seems to think the side effects (e.g., cars go closer to riders with helmets, riders feel safer, may ride risker; helmets dissuade riders) do shift the trade-offs in the other direction — I just still believe the severity of the risk overwhelms these effects
• TEDxCopenhagen – Mikael Colville-Andersen – Why We Shouldn’t Bike with a Helmet
  • I was surprised, the talk seemed to be more about the perception of bicycling as unsafe, and that helmets fed into this perception.  There may be some merit to the idea that the thought of wearing a helmet is interpreted as bikes are not completely safe, but I think most people get that already, the helmet just puts this observation “in your face.”  Cars are not completely safe either, but they are safer with seat belts and airbags, and other technologies are under development to improve safety, helping those cars to differentiate from others that are less safe — I am OK with my kids differentiating themselves from other riders as “safer.”
• Brain surgeon: There’s no point wearing bicycle helmets,  Chris Matyszczyk, CNET, June 2014 — A few basic points made here:
  • helmets induce car drivers to drive closer to the cyclist
  • helmets by law reduces bikes purchased, a goal of the auto industry
  • helmets give riders a false sense of safety, encouraging riskier behavior — this one is interesting, and reminiscent of a similar observation about improved football helmets correlating to more head injuries
    My thoughts: I cannot control the drivers, and do not care about the auto industry goals, and I think I can mitigate the possible false sense of safety for my kids (plus, road rash and other injuries are plenty of incentive to ride as safely as possible) — and it’s still worth the trade-off
• Sarah Wilson: quotes some medical people, esp. anaesthetist Dr Paul Martin, who wears a helmet for sport cycling but otherwise does not.  I am motivated by the actions of those with insider/special knowledge (i.e., actions speak louder than words), so this one was more compelling than I expected.
  • I still hold that adding a helmet has little downside (some are silly IMHO), and while the chances of a severe accident are low, the intensity of such an accident is extreme.

What makes this more difficult is that all of the kids friends do not wear helmets, it appears, in our current neighborhood.  In my previous neighborhood (i.e., a college campus), virtually everyone with kids did (but the college students did not while riding on the campus).

So I think I need to make a clear rule for now, and allow more nuance as the children mature and make their own decisions.  I may need to edit this post over time, but for now I am trying to accept that I need to provide some guidance.