Project Alex: Things I Do Not Understand

Part 1 of what will surely be an infinite series.

When Alex turns eighteen, he will be eligible for Medicaid and also for SSI Benefits. SSI stands for “Supplemental Security Income,” and according to the Web site, it is intended for “disabled adults and children who have limited income and resources.” We estimate that under this program, Alex will be given something like $700 a month — could be more; might be less — which is somehow supposed to pay for 100% of his food, clothing, and shelter.

How “limited” must Alex’s resources be before he qualifies for this program?

He cannot have more than $2,000 to his name.

The same goes for anybody 65 years of age or older who applies for SSI benefits. If you have $2,598 in your checking account, the government says, “Yeah? Okay, you’re obviously set for life.” And there will be no benefits for you.

There are many flavors of wackiness to dissect here. In no particular order:

1) I am trying to comprehend how the bureaucrats concluded that if you have $2,001 in assets, you are in no need of assistance. Somebody, somewhere, decided this; other people thought it made good sense; and it has been enshrined in law ever since.

My bafflement at this led me to write to the Social Security Historian, who is a real person and who wrote back to me just two days later to say: Beats me. All he could say was that in the original law, passed in 1972, the threshhold was set at $1,500. It was upped to $2,000 in 1984 and has remained there ever since.

2) I played around with this adjusted for inflation calculator and learned the following: The $1,500 mark established in 1972 would be about $8,500 today. The $2,000 mark put in place in 1984 would be about $4,500 today. Any way you cut it, from the beginning of the program to the present day, SSI is only given to those with pretty much no money or assets at all. So why not just make it zero? What is the point of setting the mark at an all-but-useless two grand? I would love to understand this.

3) Reading the SSI Web site, it would certainly seem that the benefits are intended only for those at the direst level of poverty. Except, no, because every single person we have spoken to about this assumes we will apply for, and receive, the benefit, as soon as we game the system in the approved manner. For Alex, this will take the form of the Special Needs Trust, which, if we go that route, we will fill with as much money as we can manage. If we make the horrible mistake of overlooking some passbook savings account started when he was five, and that account now has $2,165 in it, he’s screwed. But we can put a hillion jillion dollars into a trust fund and as long as we call it the right thing, the SSA is peachy-fine with it.

Granted, the trust fund money can’t be used for basics like food and clothing, but that doesn’t change what for me is the core absurdity here. “We have very strict rules. You can get around them in the following ways…”

Since starting this project, I’ve heard from a few people who assure me that dealing with the Social Security Administration is a total freaking nightmare. I have an appointment early next week with our financial advisor, who specializes in preparaing for the future needs of disabled children. He is a strong advocate of Special Needs Trusts, so that we can get SSI benefits for our son. We plan on asking him if there isn’t some other way forward. We might be able to make it work. I don’t know. But it’s hard to imagine that most people could manage this — a lot of people don’t start planning early enough, or they simply don’t have the resources to free themselves from the yoke of government assistance. I’m no fan of state lottery games, but sometimes I understand why they’re so popular. For a lot of disabled kids, the two choices are Powerball, or Poverty.

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Project Alex: Trust Fund Kid

When we first heard about Special Needs Trusts, we thought: There it is. The very thing we need. How good of the government to create this financial instrument for us! We can put money into this trust fund, and after we die it can be administered by either Alex’s sister or a non-profit organization, and from that fund Alex can buy the bulk of what he needs. He’ll also have Supplemental Security Income (SSI) from the Federal government, and Medicaid, to fill in the gaps. At last, the path is clear!

Except, no.

There are very strict rules overseeing how the money in a Special Needs Trust can be spent. The beneficiary can buy furniture with it, and medical expenses not covered by Medicaid, and odd expenses like haircuts and supplies for whatever hobby the beneficiary might have. Those who are pro-Special Needs Trusts will often fall into the role of a game show host informing a contestant that he has won fabulous prizes: The money in a trust can be used for vacations! Summer camp! All manner of recreation and entertainment!

Sounds great. However, the money in a Special Needs Trust cannot be used for any of the following:

– Food
– Clothing
– Housing

The government absolutely insists that if a disabled adult receives SSI payments, that this money — and only this money — be used to purchase the basic necessities of life.

Well, okay, let’s play by the government’s rules for a while. How much would Alex get in SSI benefits?

My wife has done the research on this and has come up with a figure of about $700 a month — most of that from the Federal government, and $200 more from the state. It might wind up being a little higher, but probably not significantly so. That pool of money is supposed to pay for… well, everything short of haircuts and toy trains.

In addition, Alex will probably find himself on food stamps, to the tune of about $200 a month. How this is supposed to work is anybody’s guess. As former foster parents, my wife and I have had many dealings with the food-distribution bureaucracy — not the food stamp program itself, but a related program called WIC (Woman, Infants, and Children). Oh my goodness. The rules! The millions of ridiculous, picayune rules! Some of them have a slight whiff of sense — I can understand how some committee somewhere came to the conclusion that WIC recipients shouldn’t be allowed to blow the whole check on Cheetos. But most of the rules feel like they were generated at random by a malevolent computer. We weren’t allowed to buy formula in large cans; only in (more expensive) smaller cans. We were allowed to by 36 ounces of Kix, but only in the form of three 12 oz. boxes, not two 18 oz. boxes. And so on. We have not yet done the research on the food-stamp program here in Connecticut, but we have every expectation that it will be just as rules-laden and Byzantine. Do we want to force Alex into this ever-changing labyrinth? Take a guess.

So the question now becomes: Can we set Alex up in such a way that he can bypass all of this? Just skip over SSI and food stamps and go it alone? How much money would that take? And — by the way; we kinda glossed over this bit back in the first paragraph — who would administrate that money? We’re not about to just hand a lump sum over to Alex and tell him to have fun.

These are some of the many questions we’ll be looking at going forward.

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Project Alex: The Brass Ring

So here’s a good place to start: What would we want for Alex if we could have anything at all?

Well, first of all, we’d get him to a higher degree of functionality and independence than we see right now. Presently he can prepare a few foods in the kitchen — hot dogs, mac and cheese, scrambled eggs, breakfast cereal — with varying levels of supervision. He’s a crackerjack heater-upper of leftovers in the microwave. It’s a fair start, but we’d love to see him more maneuverable in the kitchen, with a small library of simple things he can cook for himself.

And that goes for the rest of the house as well: Future Alex should be able to do his own laundry, keep himself clean, properly take his medication, and so on. The laundry bit should be no problem — he’s already very helpful on that front. He does a decent job in the shower, but there are other matters of personal hygiene that I don’t know how the hell to approach them. Trimming fingernails and toenails — that’s a big one. He just doesn’t have the coordination for it right now. It’s a surprisingly subtle art, positioning the little clipper precisely so, and then applying just the right amount of pressure. I can more easily imagine him preparing trout almondine than trimming his own toenails. Also a challenge: Getting the ideal amount of toothpaste on the toothbrush.

Medication is a significant issue as well. Obviously, this has to be done right. He’s off to a pretty good start — more than once, he has reminded us, his parents, that he has not taken his final pill, even coming out of his room after lights-out to rectify the oversight. He can pull apart his capsules, so that he might sprinkle the powder into his yogurt. (He can’t take capsules or non-chewable pills the traditional way, with water.) The daily patch he wears is a problem: Stripping the patch from its adhesive backing is semi-tricky even for me, and I guess he’ll have to start wearing it on his rib cage or something, because he would never be able to remove the patch from his own back.

Not that I think today’s medications and dosages will remain in place forever. They’ve changed before and they will change again. Alex will have to adjust.

But all of this — Alex’s dinner menu, what shampoo he’ll use, etc. — ducks the real question. Where will Alex live? What will his daily routine look like? What sort of supervision will he have? Right now it’s hard to imagine.

We’d love to see him in a group home. He’s got his own bedroom. A bus comes by to take him somewhere — a job, maybe (makework, to be sure), or some sort of daily activity. (Today’s Alex would be perfectly content watching Pixar movies all day and eating cheese sticks and salty snacks. He’s going to need motivation to get out there into the world.) That same bus takes him to the supermarket. He uses a debit card to buy food for himself, from an account refilled from a trust we’ve established for him. One or more diligent supervisors stop by periodically to make sure that the Alex train is fully on track.

He is happy every day.

Oh, and none of this requires every single red cent my wife and I have saved over the years, nor does it place too much responsibility on the shoulders of Alex’s younger sister.

I believe that about covers the waterfront. Totally doable, right?

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Project Alex: A New Chapter

Over the years, this blog has discussed politics, and writing, and puzzles. There were times where I would regularly jot down every random thought that entered my head, and there were far more frequent times when the blog wasn’t updated at all. Not that long ago, I exhaustively discussed my participation in a weeks-long trivia game. You just never know what you’re going to get around here.

Well, now this blog opens a new chapter, in which I attempt to dissect, digest, and generally figure out the single most pressing issue of my life.

My son Alex is 14 years old, and he has Fragile X Syndrome. This means that his X chromosome is literally broken. This has imbued him with all kinds of disabilities, both physical (low muscle tone, poor coordination) and intellectual (his reading skills are limited, and he plateaued in math about eight years ago).

I have very little clue what is supposed to happen to Alex when he is an adult… particularly after my wife and I have died.

We have waded hip deep into the world of special-needs trusts, Section 8 Housing, Medicaid, the services supplied by the Department for Developmental Services, and a host of other topics. We go to seminars, we attend webinars, we read news stories, we dig through Web sites. (By “we” I mean, primarily, my wife.) The whole endeavor reminds me of the “subtraction stew” that Milo and his friends eat in The Phantom Tollbooth. For every fact we consume about caring for adults with disabilities, it feels like we understand less and less.

And so, we turn to this blog. The plan is to delve into subjects related to the future care and feeding of Alex and kids like him, and explain them to you, Imaginary Reader, in a straightforward manner, so that in so doing, I might come to understand all this better myself. Also, hopefully my declaration that this is an Important and Ongoing Project will spur me to do the research that will need to occur if this is going to work.

Stay tuned.

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How to enjoy a National Puzzlers’ League convention

1. Get there on Wednesday, so that you can go to the picnic. Over the years, this has become the true start of the annual NPL convention, though officially the con doesn’t get going until Thursday evening. This year the variable weather in the host city — Portland, Maine — forced the picnic indoors, and the food was more snacky than dinnery. A perfectly legit way to go, picnicwise, but I was traveling with my family, and I wanted them to have something to eat beyond Whoopie Pies and Moxie. Also, my son sometimes has a problem with crowds, and this was one of those times, so we walked down to the Portland harbor and found a restaurant where the wife and I could get lobster-based meals and the kids could get nugget-based meals.

2. Just because you had dinner, though, doesn’t mean you can’t go out for a second dinner, if you’re invited along by NPL friends. Over pizza (the best I’ve had in a long time), discuss puzzles, math, pop culture, games, opera, trivia, and who even remembers what else. That’s how conversations tend to go at NPL cons; that’s one of the main reasons I go to them.

3. Late-night games! You have to play late-night games! Conventiongoers bring along home-brewed versions of different game shows, as well as wholly original offerings, and these get played and re-played late, late, late into the night. This year I had a slight logistical concern: Sure, I could stay up playing games until 3:00 a.m. — that is by no means unheard of — but I knew that I would regret that in a major way when my children inevitably woke up four hours later. So I didn’t get in nearly as many games as usual. But I managed to hit my short list of must-play games. “It Takes Two,” in which partners have to work together to figure out every trivia answer, is at the top of that list… and happily, this year the inventor ran an afternoon session for us early birds. (And which my partner and I won!) I also stayed up late specifically to play my friend Jeffrey’s latest version of Jeopardy!. He’s been running a new game each year, with categories and questions that dance between challenging and wonderfully absurd. This year’s Maine-themed game had categories devoted to Murder, She Wrote, and the Cryptozoology Museum. And instead of that old Jeopardy! standby “Before and After,” we had “Before and Lobster.”

4. Yes, it’s the National Puzzlers’ League convention, but you’re allowed to do things other than puzzles. In Maine, my wife took our son to the local train museum. My daughter and I, and a bunch of other NPLers, hit the beach for some glorious open-sea kayaking. Glorious, that is, once we actually got our kayaks on the open sea. Lea and I went river kayaking last year, and I stayed bone dry the whole time. This year, trying to get the kayak past the breaking waves, I was drenched from head to toe in about ten seconds. But then we were on the water, and it was beautiful, serene, joyful. It dawns on me that I can probably go kayaking even here in my home state of Connecticut. I should look into that.

Daughter and I also went rock climbing in Portland, making this by far the most physically exerting convention since the one in Montana back in 1999, when a whole bunch of us went white-water rafting.

5. There’s a big foodie contingent in the NPL, and each year they hit the shmanciest restaurants they can find — I’ve joined them a couple of times. This year, with kids in tow, that wasn’t in the cards… although we did manage a tremendously good meal at Nosh Kitchen Bar. My barbecue pork sandwich wasn’t as life-transforming as the barbecue I had at last year’s convention in Austin, Texas, but the Nosh version had a layer of macaroni and cheese right there in the sandwich, and if that is not the definition of good food, I don’t know what is. And my wife is now obsessed with learning how to make the restaurant’s “Belgian fries.”

6. I’m up to point 6, and the convention hasn’t started yet. At a convention of puzzle lovers, our official events consist of trivia and word games, scaled up so they can be played by 200 people in a go. Favorites from this year include Trip Payne‘s very clever deduction game, “Ten Clued Very Much.” (Bonus points for that name, amiright?) Players had to figure out ten specially chosen words, using as few clues as possible. Each clue pointed to exactly two of the words — “Word 2 and Word 6 are rhymes,” for example — and each pair of words was clued exactly once. [Wait, no, wrong. See comments for a correction.] If you could figure out one word… just one word… you might, with the help of a few other clues and a couple of linguistic leaps, spark a mental chain reaction that will lead you to all the other answer words. A very fun, puzzly challenge, and one I’d love to play again.

I also enjoyed a variation on the simple trivia game of “Initials.” Sure, you might be able to name things with the initials R W, but can you name a two-word phrase with those letters in the fifth positions of the words? Now do that for a whole bunch of other letter pairs.

7. The official games are all well and good, but the highlight of the official schedule is inevitably the Saturday-night extravaganza — a team-solve puzzle event, usually a dozen or 15 puzzles strong, created by some of the best puzzlers around. Normally I get on a “running” team, racing with others to solve all the puzzles as fast as I can. This year, my friend Todd asked me to be on a more-casual “strolling” team, so that his teenage nephew, Ian, could participate. I was also able to convince my daughter to join in, fully expecting that after fifteen minutes she would say, “Can I go upstairs now?” But she stayed for the whole event, working with Ian on several puzzles, and, with assistance, doing the legwork that brought us to the finish line. Her delighted laugh when she saw the final answer made me want to jump up on the table and do a little tap dance.

8. And still there is more to do. Each year solvers bring puzzle handouts for the enjoyment of one and all — your clipboard will be stuffed with them an hour after you enter the hotel. If you like cryptic crosswords, an NPL convention is Wonderland. In addition to the many puzzles shoved at you every time you turn a corner, there are also three “official” cryptics, which are generally eye-popping constructions. This year’s puzzles were no exception. Patrick Berry’s sequel to his astonishing Teleportland cryptic of several years ago is a miracle of word weaving. I assume he’ll post it on his Web site soon; do not miss it.

9. It was an extra pleasure being there with my family. I knew I’d find ways to entertain my daughter; my special-needs son was another story. But we had a fine time taking walks around Portland. Down the block was a small park where artists and musicians set up shop — we stopped to enjoy several of them, including a wacky event where people were invited to rock in rocking chairs, thus creating abstract paintings on the canvases under the rockers. Portland has trolleys rolling around, which means my son would be delighted to move there permanently. And Alex has always loved hotels: Riding in the elevators, exploring various hallways, looking out the window at an entirely new view of the world. Here there was the added bonus of various people greeting him by name — people who last saw him in a stroller, now accepting his overenthusiastic high fives. I don’t know that the whole family will go to next year’s convention in Vancouver, but the next time there’s an east coast con? Yeah, maybe we’ll all be back.

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“Moving Parts”

It’s been nearly three years since my last New York Times Sunday crossword. Way too long! We rectify that oversight with a new puzzle you can find in the 7/20 issue of the Sunday magazine. Expert solvers can avert their eyes from the special instructions — the puzzle will still be solvable, though it might take a little longer to figure out what’s going on. Enjoy!

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Emoji That

A comedian on Twitter tried his hand at recreating a famous movie, from start to finish, in the medium of emoji. Can you figure out what movie this is?

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“April is for Authors”

I’m back from hanging out with two dozen authors and about 1,000 kids at “April is for Authors,” a popular and well-run festival in Palm Beach, Florida. Let’s see, what did I do down there…

– I palled around with Tyler Whitesides, author of the “Janitors” series. Kids regard him as a flat-out rock star — I have never seen kids get so starstruck about a writer. He literally could not walk around town without kids running up to him, asking for photographs.

– I was on a panel with Chris Grabenstein (“Escape from Lemoncello’s Library”) and Lisa Graff, ostensibly on the subject of puzzles in fiction, though we wound up covering the whole writing waterfront — first drafts, rewrites, finding the perfect ending, etc.

– All the authors were asked to do two sessions of a seminar about whatever we wanted, and I thought I might teach kids how to write mysteries. Looking through the program, though, I kind of panicked — I was the only one doing something “teachy.” Everybody else was talking about how they wrote their latest book, or “How I Became a Writer,” or something like that. Well, whatever — I didn’t have a backup plan. I would do my seminar with whoever showed up. But it turned out great. I had a decent crowd for both sessions, and while I stumbled a bit because it was such a new presentation, there were teenage writers taking notes and asking questions. I was very pleased.

– Oh, and the day before I had an excellent school visit at Sunset Palms Elementary School, where I spoke to something like 50,000 kids. Or maybe my memory is playing tricks on me. It’s a big school, though, that’s for sure.

– More name dropping? Sure! Somewhere there’s a selfie of me and Terry Trueman that I hope I get to see at some point. I got to chat with Alan Silberberg, Lynda Mullaly Hunt, the poet Robert Forbes, and A.S. King. I resisted telling A.S. how much I like her name because it can also be respaced as a word. I suspect she’s heard that before.

So, a very nice few days, and I signed a whole bunch of books to boot. Great to be home, though, of course, and to see my kids when I woke up this morning.

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A shorter-than-usual ACPT wrap-up

I bounced around this weekend between varying states of healthy — one minute I felt fine, the next minute the cold I thought I had left behind came roaring back. Friday night at the American Crossword Puzzle Tournament, I did something utterly unheard of: I was in my hotel room by 8:30 p.m. and asleep by 9:00. Ten hours of sleep surely went a long way to allowing me to survive the weekend.

My preparations for this year’s tournament consisted of thinking seriously, on more than one occasion, that I should probably solve a few crosswords before the tournament began. I never really got around to the actual solving part, however, and it showed in my final results. Just a couple of years ago I peaked with a ranking of 79. This year, I was clean on the first four puzzles, but too slow to rise above a rank of 100. Then Brendan Emmett Quigley’s puzzle 5 crushed me like an insect. Final result: A not very satisfying 152.

To the surprise of nobody, Dan Feyer won his fifth championship in a row, tying Tyler Hinman for most consecutive wins. Am I crazy, or does Dan seem to be getting even better at crosswords? He had a mistake in this year’s final puzzle for about twenty seconds — a mistake that happened to include some correct letters, so he was able to put in some crossing entries. That’s the sort of thing that sends lesser solvers careening off the road — how can this be wrong when these letters are right? But Dan caught his error in no time flat, replaced it with the right answer, and never looked back.

During the finals, I was sitting next to top-notch solvers Amy Reynaldo and Stan Newman. Neither was able to complete the final puzzle, with the hardest set of clues, in under 15 minutes. Amy told me that former champion Trip Payne took 17 minutes. Such was the feeling that the final puzzle was a killer diller, the A-level finalists were given 20 minutes to solve it instead of the usual 15.

Dan never paused. He filled in the grid’s final letters in a little under eight minutes. It should be said that Tyler Hinman and Howard Barkin, the other finalists, also turned in extraordinary times — somewhere between ten and twelve minutes. But Dan is simply solving on some higher plane. It’s amazing to watch — and I have to imagine that we’ll be watching it for years to come.

Congrats to Dan, and to Tyler and Howard as well. See you next year in Stamford, CT. Now what did I do with that cold medicine?

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It’s a Push

My daughter has been learning Javascript through Codeacademy’s online series of courses — ergo, I, too, have been learning Javascript. It’s been smooth sailing, more or less — we made a rock-paper-scissors game with no great difficulty, and we’re starting to wrap our minds around for loops and if statements.

Every once in a while, though, Codeacademy tells us to use a command without adequately instructing us on how to do that. And so, I turn to anybody still reading this moribund blog for an extra helping hand.

The command in question is push. I understand the basics of it — you use push to tack additional elements to the end of an established array. So if…

var dogs = ["poodle", "collie", "dachsund"];

…then the array “dogs” will now be equal to poodle,collie,dachsund,chihuahua. Pretty straightforward, so far.

The task at hand is to search for my daughter’s name in a string of text. This has been challenging, but graspable: We have a for loop that checks characters, one at a time, in a block of text. When one of those characters matches the first character of Lea’s first name, it pushes it into an array (an array that starts off empty), and then grabs the next two characters and pushes those into the array as well, first one and then the other.

Except it’s not working.

Let’s look at the code.

var text = ("yak yak yak yak Lea bladi bladi bladi Lea bladi yakity yakity Lea yakkkkkkkkkkkkkkkk");
var myName = ("Lea");
var hits = [];

Okay, that establishes the variables — the block of text; Lea’s name; the empty array. Here’s the troublesome bit:

for (var m = 0; m < text.length; m++); {
if (text[m] === 'L') {
for (var n = m; n < m + myName.length; n++); {

(Bah, WordPress won't let me do the indenting.)

So what's SUPPOSED to happen here is, when the mth character of the text matches L, the second for loop runs. That loop is supposed to push the nth character of the text into the array, plus the two that come after it. If I can check the value of a given character with text[m], then why can't I push that character with hits.push(text[n])?

Follow all that? Yes? Help?

I also can't figure out how to format an HTML web page so that when it encounters Javascript code, it runs it, so that we might take what we've learned out of the Codeacademy sandbox and try our luck in the real world. But that can be a problem for another day, I suppose.

Update: Already solved. We shouldn't have put semi-colons after the for statements -- it was as simple as that. Jeez. Thanks, Tyler!

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