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World-transforming Jamie news

When I got home from teaching and doing stuff late Tuesday afternoon, I received a piece of strange and surprising news: the people who run the LifeLink apartment had called to find out if Jamie could move in this week.

I realize this information requires some unpacking.  Here in State College, there is an apartment for teenagers and young adults with disabilities; it’s part of the larger (and very amazing) LifeLink program (you can get some details on the high school / college part of it here, and there’s a wonderful documentary available for viewing here).  People put in applications for short-term stays, and the whole thing is supervised by various coaches and teachers.  We’ve gone to two of the Open Houses (one last year, one this year), and we’ve been talking for the past 16 months or so, off and on, with Jamie’s teachers and aides about when he might be ready to try to move to The Next Level of independent living.  Last month, Janet and I actually filled out the reams upon reams of paperwork necessary for an application (specifying, for example, what kinds of things Jamie can and can’t do independently or with minimal prompting, and what kinds of activity outside the apartment—from going to the apartment-complex gym to traveling around town on his own—we would and would not permit).  And we had just started to think about the initial stages of maybe commencing the process of beginning to think about when we might want to contemplate maybe putting in an application for a four-day stay.

Now, let me back up a moment and put this in a larger context.  Seven or eight years ago, I began to talk to Jamie about what he might want to do when he becomes a man.  I mentioned a variety of living arrangements—with us, in a group home, in an apartment with one or two other people.  His first answer, no doubt inflected by his fascination with a local restaurant that adjoins a hotel with a pool (so that you can see the pool area on your way to Mad Mex), was that he wanted to live in an apartment with a pool.  (He meant apartment building; even at 10, he knew that individual apartments usually don’t have pools.) Within a couple of years, however, he had decisively backed away from this option; the next time we talked about it, sometime in 2003, he said, ashen-faced, “I want to live with you.” His tone suggested that he feared that I was threatening to boot him out of the house someday, so I assured him, “Jamie, of course you can always live here.  We will always love you and you can always stay with us.  I’m just saying that when you’re bigger, and you might want more privacy...” “No,” he insisted.  “I want to stay with you and mom.”

That’s where things stayed for the next four or five years.  Whenever the subject came up, I told Jamie that he could always live with us in his own room, but that if he ever wanted more privacy, he could think about some other arrangement.  (Perhaps an adjoining cottage!  Though someone would have to build it, I suppose.) And he always said that he would stay with us.

Well, then came late adolescence, and with it, the knowledge that other kids were living in the LifeLink apartment, learning how to cook and clean and spend their own money, etc., and slowly Jamie’s attitude began to change.  I like to think that all my travels with him helped in their way as well, giving Jamie more confidence and savoir faire in his movings-around in the world.  Anyway, over the past few months, as Janet and I have tried to get Jamie to—what is the term of art?—do more around the house (make his bed, tidy up his Underground Lair in the basement, clean up after dinner), he has often responded like a teenage boy.  And whenever that happened, Janet or I would say, “you know, you’ll have to do this kind of thing at LifeLink,” and lo!  it would get done.  Clearly, this apartment-living thing was a serious motivational tool.  We just weren’t sure when Jamie would be ready for the real thing—or (as you have no doubt surmised by now) when we would be.

So when the call came on Tuesday afternoon, it came as a shock.  To us, that is.  Apparently, one of the residents of the apartment had gotten sick and gone home, and there would be only one kid in the place through Sunday.  Not wanting to leave that one child alone (albeit with the usual coaches’ supervision) all that time, the LifeLink people called to offer Jamie a six-day stay.  Jamie was like, “cool!  goin’ to LifeLink.” We were like, “ZOMG HOW DO WE PACK WHAT DO WE DO ZOMG.” But we calmed down (a little), made arrangements to drop him off at 8 (after dinner and a shower and a change of clothes), and began to put together his clothes and toiletries and necessary electronics, even programming into his (recently-purchased and rarely-used) cell phone the numbers of his family members and afterschool companions.  We met his roommate, a delightful young man Jamie has known for some time, but not well enough to know that they share a love of the Discovery channel, Animal Planet, and The Dark Knight.  And after the meet-and-greet and the bed-making and the general moving-in were done, we left Jamie to his own devices at precisely 8:45 pm, Eastern time, December 1, 2009.

A historic moment, far more important, in the grand scheme of things, than Barack Obama’s speech or even Tiger Woods’s crash.

I was sorry that I did not have the chance to perform the traditional father-son knife fight, but I did note with wry amusement that Jamie’s first home-away-from-home was much nicer and ten times roomier than Nick’s had been.

We’ll be checking in on him now and then—he’s only a few miles away.  But still.  Our hearts are in our throats, and an ox stands huge upon our tongues.  Fortunately, my hands are still free for typing.

As we were leaving our house for the fateful ride over to the apartment, Jamie, starting down the back stairs with his iPod, stopped and said, “I have to get my suitcase.” “That’s OK, sweetie,” I replied.  “I’ll get it—it’s quite heavy.”

“OK, sure,” Jamie shrugged, and then added in a singsong voice, to no one in particular, “what are parents for?”

What are parents for, indeed.

Posted by on 12/03 at 07:03 AM
  1. That’s pretty much awesome. I’m sure Jamie will be fine, but I hope the parents can hold up.

    Posted by Jason B.  on  12/03  at  08:20 AM
  2. Too cool. Jamie, next you’ll have to learn how to request money from your parents from afar—that’s another thing parents are for.

    Posted by  on  12/03  at  08:35 AM
  3. This must be very hard for both you and Janet. In many ways it is the culmination of all your excellent parenting. It is certainly a big moment for Jamie (who I still think of as the little boy in Life As We Know It). Does this place have a pool?

    Posted by  on  12/03  at  09:05 AM
  4. It does, Chris, it does.  Unfortunately, it is an outdoor pool.  But just wait for spring!  Only five or six months away now.

    Posted by  on  12/03  at  09:43 AM
  5. Congratulations to Jamie! And comfort to his folks!

    Captcha: together

    Posted by A White Bear  on  12/03  at  10:10 AM
  6. Unfortunately, it is an outdoor pool.  But just wait for spring!  Only five or six months away now.

    Short-ball hitters. It’s stimulatin’!

    Big ups for J!

    [heartrending catcha: together]

    Posted by  on  12/03  at  10:11 AM
  7. What’s with that captcha?  All together now?

    Posted by  on  12/03  at  10:28 AM
  8. "I like to think that all my travels with him helped in their way as well, giving Jamie more confidence and savoir faire in his movings-around in the world.”

    Well, yes, of course. He has logged more miles in his 17 (18?) years than the majority of humans who have ever lived on this planet have done in an entire lifetime. That tends to reshape your view of life and yourself.

    Captcha: century

    Posted by Sherman Dorn  on  12/03  at  10:33 AM
  9. That ox you mention must have a Baton Rouge cousin.

    Thanks very much for this great update and best wishes to Jamie on this new adventure. Any kid who insists on the snake necklace on the bayou tour will handle the LifeLink just fine!

    Posted by John Protevi  on  12/03  at  11:59 AM
  10. Congratulations to Jamie and to his parents for being able to let him go!  We made our children, now 8, sign contracts stipulating they couldn’t leave home until 27, and only then to a domicile within .25 miles of our home.  This is a key parenting strategy, I’ve found--get them to promise things in writing early on while they are too young to know what it’s all about.

    Posted by  on  12/03  at  12:16 PM
  11. What a wonderful breaking news story in the midst of what Atrios is calling Tiger’s Penis Week.  I can only imagine the swirling vortex of pride and trepidation you and Janet are going through right now, although it must be similar to what my wife and I suffered recently when our 6-year-old special needs younger son went to a sleepover birthday party, except times eleventy kajillion.

    As always, mad props to Jamie and to his parents, whose planned obsolescence appears to be right on schedule.

    Posted by Gary Oxford  on  12/03  at  12:31 PM
  12. I endorse this product or service.

    Posted by Martin  on  12/03  at  12:40 PM
  13. I’d like to say something that’s simultaneously heartwarming AND clever, but I just don’t have it in me.  So I’ll leave it at the fact that, having never personally met either you or Jaime, that’s still quite possibly the best and most exciting news I’ve heard all week (and that’s more a comment on the news than on my week).  Congrats to Jamie and parents alike!

    Posted by Mr. Trend  on  12/03  at  12:46 PM
  14. Wow. I mean, WOW. That’s huge.

    Posted by Orange  on  12/03  at  01:12 PM
  15. Wow, Michael.  Great news!  Will this lead to a longer stay...or maybe you don’t know right now?  Have you read Jane Bernstein’s book about finding a group home for her daughter, Rachel in the World?  She would faint with envy at how relatively quickly your first opportunity arose!  I’m really excited for all of you.  I hope you and Janet can calm down enough to enjoy your time together!

    Posted by Kathy Newman  on  12/03  at  01:38 PM
  16. Congratu-gulp - and what Orange says.

    Posted by  on  12/03  at  01:41 PM
  17. ZOMG indeed. Go Jamie. Wow. But I’m still here:

    “And we had just started to think about the initial stages of maybe commencing the process of beginning to think about when we might want to contemplate maybe putting in an application...”

    Posted by  on  12/03  at  01:45 PM
  18. the traditional father-son knife fight

    Posted by k-sky  on  12/03  at  02:36 PM
  19. Gad, this post gets to be the new official entry for “bittersweet” at wiktionary.org.  (No, not the plant.) I hope I can manage a similar attitude on that far-future day when the mdslet finally clumps away from home on his terrifyingly disfigured feet.

    Posted by  on  12/03  at  03:01 PM
  20. Kathy @ 15:  Will this lead to a longer stay...or maybe you don’t know right now?  Have you read Jane Bernstein’s book about finding a group home for her daughter, Rachel in the World?  She would faint with envy at how relatively quickly your first opportunity arose!

    Yes, I’ve read both of Jane’s books on Rachel, Kathy, and I believe I blurbed Rachel in the World.  But yes and no:  yes, it might lead to a longer stay, and we don’t know; no, it’s not permanent, not a “placement” in the sense of what Jane and Rachel were looking for.  For that, we’d have to get on one of the state’s waiting lists, and if we were serious about that, we would have done it years ago.  But we don’t know if we want to go that route just yet.

    Posted by Michael  on  12/03  at  03:45 PM
  21. Orange put it well. Congratulations to you all, great news.

    Posted by Peter K.  on  12/03  at  03:52 PM
  22. Ahh...yes, sorry.  I should have remembered seeing your name on the jacket cover!  I taught Rachel in the World and Life as We Know it for the same class last fall.  I’ll be curious to read your thoughts on the visit when it’s over!

    Posted by Kathy Newman  on  12/03  at  04:16 PM
  23. Congratulations all, Jamie, Michael, and Janet. This is wonderful news, even sublime and funky, as the saying goes.

    Posted by Bill Benzon  on  12/03  at  04:52 PM
  24. This is wonderful news, even sublime and funky, as the saying goes.

    You racist.  Don’t force me to discharge a firearm into your gluteal muscles.

    Posted by  on  12/03  at  05:18 PM
  25. Make it your “sublime and funky” firearm and my “sublime and funky” glutes.

    Hey Michael, can we have a arbitrarily sublime and funky fun Friday when everyone gets to direct an explosive propelled projectile into the living fundament of the universe? Let’s hear it for the sublime and funky GNF that we all crave!

    captcha: soon

    Posted by Bill Benzon  on  12/03  at  05:26 PM
  26. And there it is, a threshold crossed. Indeed, indeed.

    Save the knife fight for his return. Hugs all around and congrats to Jamie.

    Posted by  on  12/03  at  08:25 PM
  27. Teh awesomest news ever.  Congrats to Jamie, and la famille Berube (sorry I can’t do accents):  Bon courage pour la suite.

    Posted by  on  12/03  at  11:12 PM
  28. Sian, a threshold was, indeed, indeed, literally crossed. And also metaphorically!  Plus also catachresistically and sesquipedalianically!  Also, Jamie seems right at home there (we visited briefly tonight—he and his roommate were watching Galaxy Quest after a meatloaf dinner and planning to go out to see a movie tomorrow night), and that makes me ecstatic and heartsad at the same time. If only the Greeks had come up with a word for that.

    Thanks, everyone, for your good wishes and happy thoughts.  So far, so good, on Evening 3.  And mds and Bill @ 23-25, knock it off with that inside-baseball “sublime and funky” banter, or it’s ring-a-ding-ding for you bozos. 

    Posted by Michael  on  12/03  at  11:55 PM
  29. Absolutely most excellent, indeed great worthy of waiting an extra day to be manifest.

    Posted by  on  12/04  at  12:42 AM
  30. Sorry, one more “S & F” for the road: the promised MB lookalike from a few threads ago.  Don’t make me post it at CT!

    Posted by Dave Maier  on  12/04  at  01:23 AM
  31. hip hip hooray!
    Oh fabjurous day! Caloo...well you get the general idea.

    Seriously, this a giant bowl of awesome with awesome sauce, served with a side order of fantasticness.

    Posted by rev.paperboy  on  12/04  at  05:57 AM
  32. or it’s ring-a-ding-ding for you bozos.

    Oh that’s why i never run into any of you, you have been on the Bozo bus, while the rest of us have been on the Bolo bus (that is an S&F shout out to Sven).  Still all some dog doo daa music to me… or only a Northern Song for Jamie, whose iPod was very full for sure.

    Posted by  on  12/04  at  06:56 AM
  33. Michael @ 28,

    I don’t know about the Greeks, but might I recommend the (Brazilian) Portuguese word “saudade,” which has no literal translation to English but is effectively “the presence of the absence [of someone]”.

    Posted by Mr. Trend  on  12/04  at  10:37 AM
  34. the promised MB lookalike

    The eyes are about right.  But the ‘stache?

    Mr. Trend:  ah yes, saudade is a great word.  Maybe a little too mournful (I want something with pride in it too), but overall pretty great.  Thanks.

    Posted by Michael  on  12/04  at  11:11 AM
  35. The ‘stache is what makes it funky, don’t you see?  Better than Putin, anyway.

    Saudades is the name of a fine record by famed Brazilian musician Nana Vasconcelos.  Thanks to Mr. T. for the translation, which I never knew.  It sounds like a word for Theory Tuesday, doesn’t it?  And captcha agrees with me ["theory", no lie!].

    Posted by Dave Maier  on  12/04  at  11:41 AM
  36. Wow! Good luck, Jamie.

    Posted by  on  12/04  at  12:01 PM
  37. Very exciting/scary!

    There is nothing like that sense of confidence a kid gets after experiencing that kind of independence, even when it’s only for a short time. I’m sure Jamie will thrive and you’ll see a big difference in him.

    Posted by  on  12/04  at  12:22 PM
  38. Michael, this is fantastic news! I remember him from your classes when he was small, drawing on the chalkboard while we took midterms, and I’ve been following your story of him ever since. I’m glad he’s taking this step—and that you and Janet are as well.

    Posted by Julie Clarenbach  on  12/04  at  01:38 PM
  39. Wow.  Thanks for writing this and, as always, sharing stuff about Jamie that gives me hope for Jack (who is six).  Words can’t capture how simultaneously difficult, scary, and rewarding it is to raise a child with a disability such as T21.  Your post comes close. 

    Did you know about the LifeLink program when you went to Penn State?  We plan to obsess over Jack’s post-secondary options right after he finishes first grade, so perhaps we should fill out the application now.  Do you know of other programs like this or is it fairly unique?

    John

    Posted by  on  12/04  at  02:39 PM
  40. This is cool to hear. I was going to make a well-wishing sublime and funky joke, but am late to the party on that one, so let me just wish Jamie well! smile

    Posted by  on  12/05  at  07:37 PM
  41. Can’t think of much to say, but this made my Saturday night glow much more warmly here in the chilly PNW.

    I’m planning to move back in since you have some extra space now, Michael-- heated pool or no.

    Posted by  on  12/06  at  03:10 AM
  42. So happy for you Michael! And for Jamie.

    (Also loved ur post below).

    Posted by Marc Cooper  on  12/06  at  03:12 AM
  43. Here I was, thinking it was all momentous that my little guy discovered his feet today (and also that he didn’t immediately demand to be taken out of his Oregon State football onesie after the 4th quarter of Thursday’s game).  But this news about Jamie, this is some serious news.  Congratulations to him, and hugs to you and Janet.  What a wonderful thing!

    Posted by  on  12/06  at  07:50 AM
  44. OK, Jamie’s home now and happy for the experience—as are we.  Can’t wait to do it again, maybe in January.  And while he was away, he received ... are you sitting down?  his first job offer.  Again, it’s just a little “transition” thing, four hours a week, but still.  Details TK.

    Marita, Dash found his feet?  Congratulations!  You know what’s next, right?  Walking.  Then borrowing the car.  You’re in for it, basically.  Now, if only the Beavers had found theirs.  We were rooting hard for you, not least because we knew you would pwn Ohio State.

    Marc, thanks!  And also thanks! I can’t find anyone who likes Obama’s neo-surge, either, but we can’t say we didn’t see this coming.  And you—have you been running marathons and stuff?

    Romy B., your room is ready, and breakfast is served at 8.  You know, just like before.

    Elroy, I think we can see the difference already—he carried his suitcase up to his room and put away his laundry.  But then, we’re used to these leaps and bounds.  After large family gatherings, Jamie usually expands his vocabulary and his expressive range; in fact, after this Thanksgiving I suggested that he see a doctor about a rash and he replied, “I don’t think I need a doctor—we need to see a dermatologist.” If he had said such a thing even three or four years ago I would have fallen over.

    Julie—hi!  And glad to see that you’ve made what (clearly) appears to be the right decision for you—and good luck with helping others escape, as well!

    And John:  Did you know about the LifeLink program when you went to Penn State?  We plan to obsess over Jack’s post-secondary options right after he finishes first grade, so perhaps we should fill out the application now.  Do you know of other programs like this or is it fairly unique?

    Yes, yes we did.  It’s one of the reasons we took the offers from Penn State instead of staying at Illinois or moving to Illinois-Chicago in 2000.  And as you know, it’s never too early to obsess!  I don’t know how common LifeLink-like programs are, but it’s definitely worth asking around to find out about Wisconsin’s policies and programs for people with disabilities through age 21.

    Posted by Michael  on  12/06  at  05:56 PM
  45. So glad the whole experience was good for all. Way to go, Jaimie--a job offer too. Not bad for 5-6 days out.

    Posted by  on  12/06  at  09:18 PM
  46. Good news. It is good to hear good news about families and people caring for each other. The program sounds wonderful, too.

    Posted by Hattie  on  12/07  at  03:04 AM
  47. spyder, I think we’re all bozos, even on the bolo bus. Yea, I include even St. Dilbert.

    Posted by  on  12/07  at  03:11 AM
  48. ah yes, saudade is a great word.

    I am reminded of Rilke, who turned to French because he found no suitable German equivalent for the French absence.  Or perhaps it was Sarah Palin.

    Marita, Dash found his feet?  Congratulations!

    Depends.  Are they horribly deformed, hooflike feet?

    You know what’s next, right?  Walking.  Then borrowing the car.

    That’s the correct order?  Whoa.  So the Child Services rep had a point after all.

    It’s one of the reasons we took the offers from Penn State instead of staying at Illinois or moving to Illinois-Chicago in 2000.

    The other being, of course, wanting to avoid the competition with Bill Ayers.

    And while he was away, he received ... are you sitting down?  his first job offer.

    Oh, this just becomes more and more awesome.  Huzzah!

    Posted by  on  12/07  at  03:02 PM
  49. Heart in your throat and ox on your tongue.  Professor Doctor Dude, how do you breathe?

    Posted by gmoke  on  12/07  at  04:13 PM
  50. It wasn’t easy, I’ll say that.

    Posted by  on  12/07  at  04:46 PM

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