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Patience

I’ve begun to worry that my posts on Jamie are sometimes too saccharine.  I do feel a compulsion to narrate his skills and his triumphs—in volleyball, basketball, and in the all-important sport of shark-identifying—and there should be no mystery as to why.  By and large, people don’t understand children with Down syndrome unless they know one personally.  They find it hard to believe how aware, how present Jamie is.  They think of mental retardation, and they imagine that people with mental retardation just aren’t fully there in the sense that you and I are, and that (recursively) people with mental retardation are by definition unaware that (a) they have intellectual disabilities and that (b) people treat them according to how those people perceive (a).  And as long as that’s the case—for the foreseeable future, I’d say—there’s an obvious and palpable need for parents like me to tell the world that my Jamie knows all the state capitals, and, just as crucially, takes great pride in the fact that he knows all the state capitals; that he knows the difference between a mako shark and a goblin shark, and, just as crucially, that he loves knowing the difference between a mako shark and a goblin shark; or that he remembers every single one of his teachers and babysitters over the years, and, just as crucially, loves correlating them with the year 1994 in which he was three, or the year 1998 when he was seven, or the year 2004 when he was thirteen, and so on.

But just as Jamie is self-aware about his accomplishments and his talents, he’s also self-aware about his limitations.  It’s increasingly obvious to him that he has trouble doing things that other kids find routine, and, being human and all, he sometimes finds this frustrating.  (At the same time, and probably for the same reason, he’s exceptionally disability-aware.  He understands that children use wheelchairs, or have trouble talking, or are deaf or blind; he understands that this remarkable young man has a developmental disability that does not prevent him from hitting six three-pointers in the space of four minutes.) Last year, for example, Jamie learned to his dismay that he lacked the hand-eye coordination for one important task in his Harry Potter computer game, and when he saw his father complete the task easily (his father, foolishly enough, thought he was helping out), he refused to play the game for weeks afterward.  Thankfully, Jamie got over that moment, and is once again an avid Harry Potter player; but I noticed that the next time we came upon that task, and he earned a score higher than mine, he doubled over and rubbed his hands in glee, saying, “I did it better than you!” Since then I’ve been careful to note—and to remind him of—all the things he does better than I do.

Still, I do not want to give the impression that I never lose my patience with him.  Anyone who knows me knows that I am not a patient person; in fact, some people who know me are amazed that I have the patience to be the parent of a child with a disability.  “That’s part of the dynamic,” I once said to a friend who remarked on my utter inability to suffer fools gladly.  “I have only a fixed amount of patience.  Jamie gets 95 percent of it.  The rest of you have to make do with the couple of drops left over.” Jamie can be as stubborn as any other teenager, and when he gets obsessed with something—like, say, the question of where his Freedy Johnston CD is—he’s capable of asking the same question thirty or forty times.  When that happens, Janet and I have to walk a fine line: letting him know, on the one hand, that this behavior is unacceptable, and reassuring him, on the other, that we are not angry with him.

When Janet was teaching in Ireland for a month during the summer of 2003 (and Nick went along, as a student), I took Jamie with me on four weekend trips to four different cities.  In preparation for these adventures, I taught Jamie a couple of words that he could use to describe his behavior while we were on the road.  The positive ones were mature, patient, independent, and observant.  Whenever he showed himself capable of mastering a new skill—putting his clothes on, changing his own CDs, microwaving pizza (that one is a story in itself)—I told him that he was becoming more independent, which means doing it all . . . by . . . “myself,” Jamie would add, beaming.  The one negative term I taught him was “relentless.” “When you say the same thing again and again and again,” I said, “that is relentless.  You don’t want to be relentless.” Since then, Janet has updated this, teaching Jamie the more obscure but more accurate term perseverating.  When Jamie gets into one of his obsessive-repeating jags, Janet will say, “Listen to yourself.  You’re perseverating.  Now you need to think about what you’re saying, and control yourself.” The effect of this is always astonishing.  First, Jamie denies it:  “I am not perseverating,” he will say with some vehemence.  Then he will stop perseverating.

One day about two years ago, I chided Jamie for asking me about gum ten or twelve times as we were coming home from swimming.  (He doesn’t chew gum; he simply has a fascination with it.) I told him he had to stop perseverating, and of course he got pouty, and of course then he stopped.  On the drive back home, I unconsciously began to whistle the Beatles’ “I’ll Be Back,” and Jamie told me to stop whistling.  A few seconds later, I started again, just as unconsciously as before.  “Michael!” Jamie exclaimed from the back seat.  “You are perseverating.” And he was right.  So I stopped.  But not before laughing and telling him that he was becoming very mature and observant.  (Not to mention very wiseass!  And no, I didn’t mention it.)

More recently, Jamie has noticed that sometimes when I reach the limit of my patience, I sigh.  “What’s that noise?” he once asked.  “You go ‘ahhhhh.’” I told him it was a sigh, and that people sigh when they are sad or lonely or tired, and that I was tired because he was fussing about putting on a jacket before going outside.  This made him extremely curious about what kinds of things do and don’t induce sighing, and by the time we went to Ontario for the Canadian Down Syndrome Society conference last May, we had developed a whole discourse around it.  (We had also, not coincidentally, begun to develop a discourse about what I will and will not say about him in public.  I told Jamie that I would be speaking about him to a large roomful of people—he’s familiar with that phenomenon—and that one of the stories I would tell would be the story of the pizza in the microwave.  Jamie was a little uncomfortable with that, but I assured him that it was a good story about how he learned to become more independent.  However, I wanted to know if I could also tell the story of the day he was sad, or whether it was private; he told me it was private, and I promised him I would not tell that story in Ontario, or anywhere else.  So you won’t hear it here, either.) When we got to Detroit, we learned that our flight to Waterloo was delayed by almost two hours.  Now, I’m not very good at hanging around airports with nothing to do, and neither is Jamie.  We’re just not patient or mature enough for that kind of thing.  After no more than a few minutes, Jamie got bored, so I promised him that he could play Harry Potter on my laptop if I could find an outlet to plug into.  This turned out to be far more difficult than it should have been (partly because the dang C concourse was being renovated), and as we snooped around for an outlet, Jamie started to fuss, and then to fuss some more, whereupon I turned and glared down at him to let him know he was just this far from crossing the line.

“Michael?” he asked, bright-eyed and mischievous.  “Are you gonna sigh?”

Ahem.  That was observant, and I told him so.  But, of course, I did not sigh.  Instead, I asked him if he was being a wise guy, and he told me I was being a wise guy, and we did Bugs Bunny schtick for a few minutes. 

And then we waited patiently for our delayed plane, sighing together and playing Harry Potter.

Posted by on 02/27 at 01:54 PM
  1. Oh Michael!  That was not too saccharine—it was just beautiful.  I so enjoy your Jamie posts and this is one of the loveliest.  You actually brought tears to my eyes.  Mind you, I often have tears in my eyes when I finish your posts, but that is usually because I’m laughing so hard I can’t even breathe.  Bravo, bravo, bravissimo!  Jamie is a lucky young man, and we are lucky readers.

    Posted by  on  02/27  at  03:34 PM
  2. Wow, what a moving post!  You seem so, well, undangerous, professor.

    Posted by Charlie  on  02/27  at  03:48 PM
  3. No, not saccherine at all.

    Unlike a lot of storytelling about people w/ dd’s, this post’s purpose is to remind (convince, whatever) us that these people have rich inner lives and an awareness of the world around them, that, in other words, they don’t exist only as sites for us non-dd people to exercise our paternalistic praise or as places for us to congratulate ourselves for our charitable extension of sympathy to people who ought to be grateful for this extension, etc.

    Posted by  on  02/27  at  03:53 PM
  4. Michael, yours is the only blog I read regularly (I’ll read one one of your books one of these days, for realsies).

    My favorite posts are the ones you write about Jamie. He is lucky to have you as a father and academia is lucky to have you as well.

    As I go into that brave new world that has such people in it, I look at you and Bob Jensen as the type of people I can aspire to being!

    Posted by  on  02/27  at  04:33 PM
  5. Do you get the “What’s for supper?” repetition? I know all kids ask that but Russell’s relentless. I don’t know about the rest of you but I think about what’s for supper about 5 minutes before I cook it. I vaguely know that I have chicken in the freezer so I’ll say, in answer to his question, “chicken.” “And?,” he says. “And potatoes.” “What kind of potatoes?” “Um, mashed.” “Oh good I love mashed. What else?""I don’t know,” I say. “I’ll have to check the vegetables.” “Oh,” he says. “Now?” So I stop and check and say, “broccoli” “And?,” he says. “That’s it.” “No gravy?” “AARGH,yes gravy.” “Oh good, I love gravy.” And that conversation can repeat a number of times before dinner. I usually end up roaring, “ENOUGH.” Maybe I’ll try teaching him perseverating.

    I had the pleasure of eating supper with Michael and Jamie and my four kids in Waterloo last year and I thought we both had infinite patience, considering how hectic a day it was. That is, I tried to be patient as we waited for the ketchup to be delivered so that Russell would eat his supper! It’s not my strongest attribute, either.

    Posted by  on  02/27  at  04:45 PM
  6. Michael, I don’t know if your Jamie posts are too saccharine, but I do know that I usually start to tear up by the fourth sentence.  I love the posts about Jamie and return to this blog repeatedly because of them.

    Posted by  on  02/27  at  05:23 PM
  7. By the By-over at FPM Davey is whining about the mean o’ weftist attack on his site.

    Kind of like how he cried when he was pied.

    Posted by  on  02/27  at  06:11 PM
  8. I’ve been reading for several months and have never commented, but I just thought I’d say that I, too, am always looking for a Jamie post when I hit this blog. A friend of a friend recently gave birth to a baby who has Down syndrome and was still in the shell-shocked stage. I immediately sent my friend a link to your site to pass along. As I don’t have a child with a disability, I can’t be sure, but your writing about Jamie seems to me to be just what I would want to read if it were me....

    Posted by  on  02/27  at  06:14 PM
  9. Yeah, they’re re-doing the voting on FrontPage, in case you want to post about it.  Actually, they’re re-doing it whether or not you want to post about it.

    Posted by washerdreyer  on  02/27  at  06:22 PM
  10. Any saccharine quality to these pieces on Jamie come from the sweetness of the boy, and the love his parents and brother have for him. It’s unavoidable (thankfully).

    Posted by  on  02/27  at  06:51 PM
  11. It has been the insight of many great story-tellers that stories of “exceptional” people are often the most universal.  However, those of us who are burdened by being told we are smart in ways which have clout in our culture (e.g., wtih “advanced degrees") seem too often, in my experience, surprised that those who are “not as smart” have something to teach us. Human interactions are, by definition, two-way.

    Therefore, it is not surprising that we learn much from Jamie (via his father).  Jamie is articulate in ways that his father hears, and his father is articulate in ways that we hear.  This transmission of narrative is, of course, not only profoundly moving but the actual key to civilization: we continue to be people of story.

    And, is sweetness now a pejorative term?  Are we to think that sour and bitter are better?  If so, then the professor-basher who cannot be named has won.  If not, Jamie is winning.

    Quidquid recipitur per modum recipientis recipitur.

    Posted by  on  02/27  at  06:53 PM
  12. My reference to sweetness was written prior to Chris Robinson’s comment and does NOT refer to it: I fully agree with his comments (and wonder why my submission took so long to post: darn firewalls).

    Posted by  on  02/27  at  06:55 PM
  13. This fool, for one, is willing to forego his percentage of your patience in favor of Jamie.

    My mother is a retired LD teacher.  She got her Masters and Doctorate in LD studies because my sister was diagnosed with a severe disability (which she overcame to become an overworked, underpaid LD teacher), and Mom wanted to be able to understand and help her as much as possible.  Years ago, I was temporarily in sixth grade at the school where my mother taught, and she had a Down’s Syndrome student named Will.  To this day, I have not met a person with more love to give or more empathy than Will.  Even today, many years later, my mother and Will still correspond by mail.  Every time he is able to accomplish something new, he writes to her --she calls the letters “braggers,” and she saves them all.

    Too saccharine?  Maybe.  Forgivable?  Sure.

    Posted by  on  02/27  at  08:14 PM
  14. Freedy Johnston CD

    1) Jamie is teh cool.

    2) I’m more than three times his age, and if I had a missing Freedy Johnston CD I’d quite likely ask where it was 12 times in a row too. Whether that says something positive about Jamie’s maturity, negative about mine, or neutral about my ADD I dasn’t venture.

    3) As for the cyclamate content of said posts, I wonder if my having read your clear-eyed, non-saccharine Life as We Know It might not have equipped me with a context in which the occasional dotage slips under the radar. Or maybe it’s just that my own molasses-like voice out-treacles most people I read. But I don’t think these are saccharine at all. A dad loves his kid: that’s nothing to flinch over.

    Posted by Chris Clarke  on  02/27  at  08:46 PM
  15. That’s lovely, Michael.
    TH

    Posted by helmut  on  02/27  at  09:09 PM
  16. I greatly appreciate these posts about Jamie. In a culture that does all it can to make disability invisible, I think it’s great to make the point as often as possible that everyday life and disability are closer to coterminus than mutually exclusive. And speaking as a prospective parent (any takers? ladies?) it’s reassuring to know I don’t have to be afraid to have a disabled child, nor will I be obliged to idealize or kitschify disability if I do.

    Posted by  on  02/27  at  09:20 PM
  17. Michael;
    The Jamie posts are not cyclamate enhanced, but is amongst the most moving writing on the web.  Earlier Jamie posts, the Beatles, the retainer, the Potter posts have been forwarded to many, many people.  Sentiment is OK as long as we keep it far, far away from discussion of the present administration and the craziness of one DH.  They deserve and receive you excellent snark.

    Posted by  on  02/27  at  09:21 PM
  18. I second the other accolades.  Beyond that, you’ve reminded this father (who is also not known for his patience) to listen to whether he sighs in the presence of his four year old son.

    Posted by  on  02/27  at  09:24 PM
  19. Jon R. Pike is correct, by the way:

    <blockquote cite="http://www.frontpagemag.com/blog/index.asp">This weekend while my staff was in Arizona paying tribute to two American heroes, including the first woman to win a silver star in combat, leftwing vandals attacked the FrontPagemag.com site, and succeeded in interrupting our service for a few hours. We are not surprised that they find our words such a threat they feel compelled to try to prevent them from reaching their intended audience. We can have sympathy for these pathetic individuals who are so unable to articulate their ideas and so incapable of presenting a rational opposition to ours that they feel compelled to resort to Internet violence to try to stop us. But that will not stop us from proceeding with our mission which is to to defend our country and the cause of freedom from its enemies within and without.</blockquote>

    Have you no sense of decency Michael, at long last? Have you left no sense of decency?

    Posted by Chris Clarke  on  02/27  at  09:27 PM
  20. And have I no sense of HTML?

    Posted by Chris Clarke  on  02/27  at  09:29 PM
  21. Love the Jamie stories, loved the 3 point shots story.
    --------------------------------------------
    Notice how DH always juices up his stories- while we we away from the store honoring american heroes, we were attacked by the leftists!

    Even his excuses for his lies and mistakes always have that smarmy tactic.

    Posted by  on  02/27  at  10:43 PM
  22. Michael,
    This is the perfect opportunity to tell you how you helped me out. Back in the fall of 1995, my wife was newly pregnant (very newly; first trimester) and she was 36 years old, and she took a test, of which the preliminary results said there was a distinct possibility of Down Syndrome.

    Oh, shit, I thought. What a disaster, what a tragedy that would be for me.

    I found a copy of Life as We Know It at the library and went on a solo camping trip. I read the book and thought a lot while I was out there deep in Hocking Hills. I decided that I wouldn’t be glad if my child had Down Syndrome, but I wanted the child, Down or not. My wife and I had a choice, you know.

    You helped me grow up that weekend. Thank you.

    Your posts about Jamie aren’t saccharine.

    Posted by  on  02/27  at  10:49 PM
  23. Um, reading over these comments with a lump in my throat, I think maybe “saccharine” wasn’t the right word after all.  But I just had a weekend during which Jamie and I went from cute father-and-son bonding along the lines of the Jamie and Michael Show (sung to the “Itchy and Scratchy” theme song, of course) to total exasperation with each other and back again.  Lather, rinse, repeat.  The weekend started beautifully with his spirited Special Olympics basketball debut, but by the time it was over, I had spoken to him sharply a couple of times, and I just plain barked at him Sunday night, when, in the course of showing him the remarkable Jason McElwain basketball video from Crooks and Liars, he responded to Janet’s request for me to turn up the volume with a string of annoyed and annoying nonsense syllables that drowned out the entire thing.  “Knock it off,” I said, loudly and sharply, making him jump a little.

    So it occurred to me this morning that maybe my Jamie posts are too much about our little triumphs here and there, and not enough about the minor tribulations.  That’s all.  I get that kind of criticism occasionally from other parents of kids with disabilities:  “sure,” they say, “your kid is as cute as all get-out and the biggest shark fan on the continent.  But doesn’t he ever throw the car keys down the toilet?” Actually, he doesn’t, and for that I am thankful.  But he does perseverate, and he does have moments of sadness and doubt and frustration.  And so do I.  That’s what I was trying to write about today, and I thank you—plural you, as in “all of youse”—deeply for your kind words about this post.  And for reading this cyclamate- or aspartame-enhanced blog in the first place. 

    Posted by Michael  on  02/27  at  10:57 PM
  24. Michael, I’d like to expand upon what I said above.  I love reading about the triumphs; the tribulations I get enough of on a daily basis at home.  But it seems to me—as a dad with a son who presents his own unique challenges—that your triumphs, as well as your other moments, are just one more way in which your relationship with Jamie reflects other parents’ experiences.  Your writing about him really connects with me.  So, thank you.

    Posted by  on  02/27  at  11:21 PM
  25. I haven’t met a parent that doesn’t wax saccharine about their offspring, often to an annoying degree. But it take a very hard heart indeed to deny them the privilege of their waxing.

    The message that comes over to me from your posts is pretty much that Jamie is overwhelmingly just a kid like any other and much of his life/upbringing is fairly mundane. i.e. knock out the specific Downs Syndrome/disability references and it wouldn’t be obvious he was disabled at all. An important message, methinks.

    You are correct to justify yourself because of the stereotype. It’s sloppy of people to equate mental impairment disability with stoopidiity. I’ve dealt with a lot of disabled kids in the past years and none of them are ‘simple’ in any way.

    Posted by saltydog  on  02/27  at  11:30 PM
  26. Michael, my experience of your Jamie posts is that they are loving, which is a long way away from sentimental. You are expressing emotion that you feel, not emotion you think others want to see. So that’s real sugar, not some empty substitute.

    Posted by  on  02/28  at  12:19 AM
  27. Saltydog said it well, so I need not repeat.

    Your posts about Jamie are the best of the many good things on this blog, Michael.  Saccharine, no.  Sweet, yes, and there’s nothing wrong with that, esp. since they’re never easy-sweet.  You always earn it.

    Posted by E.  on  02/28  at  12:35 AM
  28. That was a wonderful story. Thank you.

    Posted by Bob in Pacifica  on  02/28  at  12:50 AM
  29. Have you no sense of decency Michael, at long last? Have you left no sense of decency?

    Well, not only does he have no decency, but if he’s not careful, he’ll soon also have no title as “America’s Worst Professor”, as the illuminated souls at Frontpage have <gasp> reset the vote counts*! Michael now has a mere 122-to-50 lead over Noam Chomsky! The horror!

    *Plus maybe made it harder to stuff the ballot box.

    Posted by  on  02/28  at  02:54 AM
  30. Very much liked this post, and comments (who could not?) Didn’t find them sentimental, or if so, only in the best of self-effacing ways, recalling the close of Robin William’s solo Carnegie Hall performance.  In that general vein.

    Posted by Matt  on  02/28  at  03:21 AM
  31. *sigh*

    For illustrative purposes only (actually using this would, apparently, constitute a heinous cybercrime. So I suggest that if you want to go on stuffing ballots, you do it the way God intended - by repeatedly visiting the voting form, casting a vote, manually clearing the frontpagemag cookie from your browser, then going back to the voting form...):

    import httplib
    
    def vote():
            conn = httplib.HTTPConnection("www.frontpagemag.com")
            conn.request("GET", "/survey/vote.asp")
            print "Cookie monster want cookie!"
            r1 = conn.getresponse()
            cookie = r1.getheader('set-cookie')
            cookie = cookie[:cookie.find(';')]
            conn.close()
            conn = httplib.HTTPConnection("www.frontpagemag.com")
            conn.request("POST", "/survey/Response.asp", "profVote=46&VOTE=Vote+Now&#x21;",
                         {'Content-Type': 'application/x-www-form-urlencoded',
                         'User-Agent':'Cookie Monster',
                         'Cookie': cookie}wink
            r1 = conn.getresponse()
            conn.close()
            print "Cookie monster cast vote now!"
    
    while 1:
        vote()
    

    Posted by Dominic Fox  on  02/28  at  07:15 AM
  32. Thank you, Dominic.  I especially want to stress the illustrative nature of your comment.  I think the entire class will find it helpful as they . . . uh . . . illustrate the networks!

    And Clare, sorry to leave you hanging way up there in comment 5.  I remember that dinner last year, and I remember Russell with the ketchup.  Jamie has a ketchup thing too, and I believe we talked a bit (all of us) about lycopene and antioxidants.  But no, Jamie doesn’t have a “what’s for dinner” thing.  He has a “where did X come from” thing—where the X is every single item on the table.  He wants to know what state the salmon came from, and the potato, and the broccoli, and the seltzer, and the salt and pepper, and the milk, and. . . .

    Posted by Michael  on  02/28  at  09:09 AM
  33. I love the Jamie stories.  I am having a hard of it, raising 2 kids with autism.  I frequently lapse into stoically suffering through it.  That’s no way to raise any child.  The Jamie posts are very pleasant reminders that life is to be enjoyed.

    Posted by  on  02/28  at  09:40 AM
  34. I appreciate it when others are as proud of their kid’s accomplishments as I am.  As the parent of two kids with developmental disabilities, I am not afraid to describe what they do.  You’ve described Jamie (and yourself) in very human ways.  It’s a very refreshing departure from the truly sacchraine descriptions we are bombarded with during the winter holiday season.

    Posted by Carrie Ann Lucas  on  02/28  at  09:48 AM
  35. He has a “where did X come from” thing—where the X is every single item on the table

    Have you ever seen Jamie and Wendell Barry in the same room at the same time? I’d be suspicious.

    Posted by  on  02/28  at  12:48 PM
  36. Professor Berube,
    The junior high student who made 6 threes in a row had the number 1 play on Sportcenter’s top ten plays a few nights back.  Also, when’s the last time a pro player made 6 three-pointers in a row?

    Posted by  on  02/28  at  02:22 PM
  37. Cool, Rhett.  And let’s remember that the only reason he didn’t hit a school-record seven threes is that he barely stepped on the line for shot number seven.

    Posted by Michael  on  02/28  at  02:53 PM
  38. I have a son who perseverates like crazy, although we’ve never put a word to it - up to now, I’ve just said, “you’re repeating yourself, honey.” But I’m gonna try “perseverate” out on him; I think he’ll like the sound of the word, and it’s much more succinct.

    Posted by  on  02/28  at  03:34 PM
  39. No, the Jamie posts aren’t saccharine at all. But you know what I’d like to see? A little more of the occasional venting about what your kid does to drive you nuts. I think there’s such a stereotype out there (and maybe it’s not the worst stereotype to have) that people with Down syndrome are so happy and loving all the time. To hear about times that Jamie is pissed off, or that he’s stubborn and thereby pissing you off—provided such things do occur—could counteract the saccharinity of the overriding happyhappy trope. (Not that you’re guilty of furthering that—far from it.) Inspirational and hopeful are good things, but people with more or less neurotypical kids also bounce between “my kid is wonderful” and “I really need a break from this kid right now.”

    Posted by Orange  on  02/28  at  04:27 PM
  40. But you know what I’d like to see? A little more of the occasional venting about what your kid does to drive you nuts.

    You could do that on your secret pseudonymous blog, Michael.

    Whoops. Did I post that rather than emailing privately? My bad.

    Posted by Chris Clarke  on  02/28  at  04:43 PM
  41. Chris, I’ll be needing that link…

    Posted by  on  02/28  at  04:54 PM
  42. I too love the Jamie posts--I mean, for Pete’s sake, he’s a teenager in 2006 who loves The Beatles!--but my only heavily qualified niggle is that his brother is often not “visible” in any of the family-oriented stuff.  From the snark that Nick has directed Michael’s way in the comments section on occasion, he seems pretty damn cool too and, while I’m trying not do that utterly annoying blog thing of whining “Why isn’t he addressing what *I* want addressed?"--and failing, obviously--I think it would be interesting to learn how Nick interacts with Jamie.  As the middle of three boys in my family, I know that brotherly dynamics are complex, and with Jamie’s disability they’re probably even more so, so it might be interesting to see how Nick deals.

    Posted by  on  02/28  at  06:43 PM
  43. Chris, I’ll be needing that link…

    Here you go, Orange.

    Posted by Chris Clarke  on  02/28  at  06:48 PM
  44. Dagnabbit, Clarke, you tricked me. Wascally wabbit.

    Posted by Orange  on  02/28  at  07:53 PM
  45. Of course the problem with talking about the stuff that Jamie does to drive MB nuts is that it seems more obviously exploitative than stuff that praises Jamie, foregrounds the loving parent relationship, etc.* Why? Because Jamie presumably wouldn’t be as hot about his dad airing dirty laundry as he (presumably) is about airing the clean.

    So. I know we--particularly parents of dd children looking for community and readers in general wanted to learn something or validate themselves for feeling appropriately--want a fuller representation of Jamie, as this falls into line with showing him as someone who deserves love and rights, as someone who deserves far more than the usual granting of pity and charity (which by their nature cannot be “deserved"). But we need to balance our desire against what Jamie desires. And in terms of representation, what Jamie desires outweighs whatever we want.

    I’m at a disadvantage though because I haven’t read MB’s book on this, as I imagine he treats some of these problems there. And I should say I’m not accusing MB of being exploitative; my unease is instead directed at my suspect enjoyment of the Jamie stories. There’s a voyeurist quality to my enjoyment because one party of the story--the party that elicits my greatest pleasure--cannot speak for himself in this forum.

    * I’m reminded of a student I had a few years back who used a wheelchair, into which, I guessed, something genetic had put him long ago. I ran across an article about him in some women’s domestic magazine and remarked on this to him after class one day after we finished talking about one of his papers. He looked weary and said that his mother wrote a lot about him, and I caught my big mouth before it made a sympathetic comment about his commodification. Instead I just grunted.

    Posted by  on  02/28  at  08:59 PM
  46. Michael:

    Echoing the rest of the above comments, I appreciate your Jamie posts.  I have a Down syndrome brother who is now 40, and we are beginning to contemplate the next chapters of his life, e.g. future loss of his primary caregiver (our mother, and his own mortality, and how we as his family will handle it.  Reading about Jamie is a reminder of the glorious upside of having a Down in the family, and of the terrible inbalance between the love pride and ecstasy on one hand, and the so-called burden on the other.  I am glad you share your stories in your way, a far better way than I could at any time of my life.  Party on, leftist scumbag!

    Posted by  on  02/28  at  10:22 PM
  47. Michael, I forty-six the non-saccharine sentiment, and have greatly enjoyed the Jamie material while learning much.

    As for your supposed impatience and “utter inability to suffer fools gladly,” that’s certainly news.  As a very late-blooming boomer, I discovered your blog in my first few weeks’ experience with the Internets; memories of my many naive and foolish comments here still evoke cringes and regret.

    In all that time you’ve only directed one mildly sarcastic rebuke this way *gulp* right?  In fact I’ve often marvelled at your patience, and wondered whether the Jamie material offered a glimpse into a sort of compassion-forging crucible.  Thanks for putting up with us all, you old softie. 

    But, is anyone else out there getting really sick of the Horowitz stuff?  Yeah, yeah-- someone’s gotta claim that mantle of danger and academic worstness.

    Posted by  on  02/28  at  10:54 PM
  48. From the snark that Nick has directed Michael’s way in the comments section on occasion, he seems pretty damn cool too and, while I’m trying not do that utterly annoying blog thing of whining “Why isn’t he addressing what *I* want addressed?”—and failing, obviously—I think it would be interesting to learn how Nick interacts with Jamie.

    Fair enough, Henry, and you get extra extra bonus points for recognizing that the cool and snarky Nick of the Comments Section is indeed my firstborn.  I have heard rumors that there are cooler and snarkier almost-20-year-olds in North America, but I cannot verify any of these reports, and am inclined to doubt them.  Anyway, the main reason I haven’t mentioned Nick very often on this blog is that he and some of his friends and classmates occasionally read it.  For similar reasons, you haven’t heard much about Janet or the members of my birth family.  I don’t write about them, narratable though they be, for the same reason I don’t tell the story of the day Jamie was sad:  it would violate their privacy (and there are other aspects of Jamie’s privacy that I won’t violate, as well).

    As for the things about Jamie’s behavior that occasionally drive me nuts:  this post was, of course, an attempt to gesture at them.  But as Karl the No Longer Idiot but Merely Grouchy Medievalist says, in terms of representation, what Jamie desires outweighs whatever we want.  Now that Jamie is sufficiently self-aware and self-reflective to be able to make his desires known in this respect, I defer to his judgment.

    I will, however (and this is either a threat or a promise, not that this is an either/or kind of blog), have more to say about Jamie and his representation in the future.

    Posted by Michael  on  02/28  at  11:34 PM
  49. As a very late-blooming boomer, I discovered your blog in my first few weeks’ experience with the Internets; memories of my many naive and foolish comments here still evoke cringes and regret.

    In all that time you’ve only directed one mildly sarcastic rebuke this way *gulp* right?

    Romy, you made many naive and foolish comments here?  And I mildly-sarcastically rebuked you once?  The former is news to me, and for the latter, I apologize.  No, wait, I blame my small staff.

    Posted by Michael  on  02/28  at  11:37 PM
  50. The thing is, this is perfectly normal kid behavior. Every well-balanced kid I know occasionally has a spell of being provocative to their nearby adults (and lord only knows all one of the kid I gave birth to does). Grownups (if they’re not actually looking for a fight) know when to back off. Kids don’t always.

    I think too it’s a way of acting out their frustrations with the people they know they can trust to still like them afterwards.

    I don’t think it’s going to do them any permanent damage to learn that one of the consequences of not being careful of the feelings of the people you love is that the people you love don’t much like it, or that the people you love sometimes aren’t careful themselves.

    Capture word “big,” which for a number of reasons I enjoy.

    Posted by julia  on  02/28  at  11:52 PM
  51. I will, however (and this is either a threat or a promise, not that this is an either/or kind of blog), have more to say about Jamie and his representation in the future.

    Sweet. I’m psyched.

    Posted by  on  03/01  at  09:15 PM
  52. Freedy Johnston, good taste!

    Posted by  on  03/02  at  08:49 PM
  53. See?  MB is possessed of saintly patience!  Truth is my under-educated butt always feels a bit uneasy chiming in here, ‘cuz the post-meta-whatever snark is so quick and dense.

    It was easier in the early days when your commentariat wasn’t so large and razor-sharp; nowadays this pack’s just too swift to run with on a daily basis.  Always a loyal reader though, and I’ll continue to comment sporadically in confident moments.  Thanks!

    Posted by  on  03/03  at  07:28 PM
  54. Romy, I’d lay even odds you’re less underedumacated than I am, and I for one always find something of value in your comments.

    Posted by Chris Clarke  on  03/03  at  07:42 PM
  55. it is surprising that we learn much from this blog. It is quite interesting.

    Posted by pregnancy first trimester  on  11/16  at  06:22 AM

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