18 October 2007

The starting gun

This is the last of four posts I originally published at LB/RB. I have included the text of the original comments at the end of the main body of the post.

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One of my high school philosophy teachers (at a Jesuit high school here in St. Louis) used popular music of the time (70's and early 80's) as a tool in classes. I mostly remember using Supertramp (Crime of the Century) and some Pink Floyd ("Welcome to the Machine" was a favorite). No surprise, then, that this habit continues to today. Check out the pop-culture label at 29 Marbles for some of my earlier posts using pop-culture as the starting point.

I've been a Pink Floyd fan for a long time, and like any true Pink Floyd fan count The Dark Side of the Moon among my favorite albums, by anyone, of all time. The song "Time" is an excellent reflection of the fleeting nature of our time in this world. The second verse includes the following lyrics:

You are young and life is long and there is time to kill today
And then one day you find ten years have got behind you
No one told you when to run, you missed the starting gun.

These lyrics are quite literal, and it is not too difficult to catch the meaning. But I gained a bit more insight into these words, especially the last line, while watching a documentary of the making of the album (told 30 years after the fact).

In the documentary, Roger Waters talks about a teenage conversation with his mother and the realization that it was time for him to start living his own life, that the "starting gun" had fired. One of the most important jobs a parent has is preparing kids for life on their own (however you may define that), a life that they are in control of (to the extent that anyone is control of their own lives).

There is a somewhat well defined path that we typically, though not always, can follow with our normal (in the statistical sense) kids. And many of us have come up with our own ways of preparing our kids for what lies beyond childhood.

But how do we let our kids, especially our autistic kids, know that the starting gun has fired?

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Original comments:

Comments

  1. Matt |

    I like the words of Crush (from Finding Nemo): “When they know, you’ll know. You know?”

    That doesn’t fit. It just points out how hard the question really is.

    Oct 10, 5:54 AM —

  2. Casdok | motherofshrek.blogspot.com

    A hard question, but a good question.

    Oct 10, 8:40 AM —

  3. Elissa | managingautism.com

    It’s a tough question!
    I think the best that we can do is to just allow them to be who they are. Life happens as it does and I guess I have always just thought that our kids will take their own journeys as they need to – as and when it is right for them.

    Oct 10, 9:18 AM —

  4. Andy Morris | chanceforrosie.org.uk

    Hi there –
    My name is Andy Morris and I live in the UK. I have a severely autistic daughter called Rosie, age 6. My wife and I have been home educating Rosie for the past 2 years on a ABA based education plan. We also have a very well publicised and exciting fundraising campaign to raise the money we need for this.

    To achieve this, about a year ago my wife Kara and 4 other women formed a very tasteful burlesque-style dance show called ‘The Full Monty Girls’. They have since performed in our local town Stroud, London, Bristol and Brighton and have raised the bulk of the money we have needed for the programme – £17,000 per year.

    As I have said, the show is very tasteful and has inspired many people. The story of Rosie and the Full Monty Girls has been on Chennel 5 news twice, the ‘This Morning’ programme, in Cotswold life magazine, Closer magazine, First magazine, the Sun and the local papers on many occasions. A major USA news programme called ‘Inside Edition’ also did a piece on the show last year.

    We have now come up with a new and exciting initiative. A very tasteful calendar has been made by the Full Monty girls. For the monthly photos, an award winning photographer took some really tasteful and beautiful naked photos of the girls (covered up in the right places, of course!). The front of the calendar features a shot of 100 local volunteers forming the word ‘AUTISM’, naked in a field, taken from a helicopter – quite a feat of organization!

    The reason that I am emailing you about this to ask if you would be prepared to put a link on your website to Rosie’s website. She has a beautiful site, explaining everything that we are doing as well as some useful information on autism. We think that it will and has inspired parents with autistic children. More traffic would help us to sell our calendar and I would hope that the high profile nature of Rosie’s story would bring more traffic to yours, also. I have a PDF of the calendar I can send to you for you to look at and a small web optimised photo if you want to use it.

    Rosie’s website is : www.chanceforrosie.org.uk

    All the best, Andy.

    Oct 10, 2:24 PM —

  5. Patrick

    I’m not sure that even when one thinks their spectrum kid is ready for the world that they truly are.

    I am one of the more independent living Asperger’s (more than 25 years of Job history) but still struggle with things that I beleive most would find easy, like managing the monthly finances, housekeeping and of course have little in the way of a useful social life.

    Of course the schools thought I would be ok, as I even completed advanced placement courses in Biology and English. (The equivalent of A levels?)

    Of course my parents thought I was ready because they had taught me how to cook and wash laundry, and for years had me doing the house/yard keeping tasks.

    But I never actually got a job all by myself.

    I work full time and haven’t the energy or motivation it takes to properly keep things up. But of course I deal with Major Depressive Disorder too, and other medical conditions like Sleep Apnea.

    I am not saying that it cannot be done, just that people don’t always turn out as well as they may Appear to be able.

    And Andy,
    While I hope your efforts for the stated purpose are indeed virtuous, the comment is off topic, and may be viewed by some as an appeal to pity, or a scam.

    What are you doing to help Others, besides your own interest?

    Oct 10, 5:28 PM — [ Edit | Delete | Spam

  6. Club 166 | club166.blogspot.com

    In an age (in the U.S. at least) when a large proportion of kids come back home to live for a period of time after college, this question certainly applies to all kids.

    But for kids that, of necessity, have had a lot of interdependence with their parents, it is doubly hard to determine when and how to get them to fly “on their own”.

    For many of our kids the prospect of living without at least some supports may never occur. But that does not disturb me. As many others have pointed out, most all of us live with ‘support’ of many types from the community at large. It is just that our society has organized itself to provide support for the majority of the population, which does not include autistics (or many other disabilities).

    I see it as part of my job as a parent of a ‘special needs’ kid to actively advocate for proper supports for all with disabilities. That way, by the time my son is old enough supports will be in place, whether he needs to avail himself of those supports or not.

    Joe

    Oct 10, 8:50 PM —

  7. Ms. Clark |

    I am glad that I didn’t have to live with my parent(s) when I became an adult (actually, I lived with my mom until I was 19, and ended up living with her again with my kids for a few weeks when I was in my twenties.) I am also thrilled that my ASD kid can live with me.

    I do understand the American (Western?) drive towards GETTING THE KIDS OUT OF THE HOUSE, but people have to understand that it’s a cultural practice, just like giving every kid their own bedroom is a cultural practice, it’s not handed down from on high as THE way to be an adult.

    There can be huge amounts of shame attached to adults living with their parents here and that is just wrong.

    Yes, parents can die and yes, there should be lots of support out there for people to live in their own homes and not have to go to an “institution” or “group home”. There may be some idea “group home” situations, but it’s my understanding that they act like mini-institutions in most cases.

    So… the “starting gun” of kids living on their own is a creation of a culture. It’s a notion that actually is kind of offensive to some people. I reject it as a mandate.

    Yes, if it’s possible for the kid to move out and the parent wants it and the kid wants it, fine. Other than that, gimme a break. It’s not necessary.

    Oct 10, 9:51 PM —

  8. Ms. Clark |

    Oh, and I find the nudist calendar and the “Full Monty Girls” stupid, sort of pathetic actually… but then that’s just my opinion. And the request here for donations was off topic and smacked of “scam,” as noted above, even if it isn’t one.

    Oct 10, 9:53 PM —

  9. Joseph |autismnaturalvariation.blogspot.com

    In Latin America, it’s fairly common for the kids to continue to live with their parents, even after they get married. Part of it is economics I’m sure.

    Oct 10, 9:54 PM —

  10. Maddy | whittereronautism.com

    I think all parents want crystal balls. I don’t know which is more annoying, not being able to see into the future or being kicked with hindsight.

    I do know that our family is in an entirely different place than we were four years ago.

    All children grow in fits and starts, so it’s impossible to know the possibilities ahead.
    Best wishes

    Oct 11, 3:47 AM —

  11. Ms. Clark

    Even if you can trace it to economics, living with parents is not automatically a sad situation, and that’s what the default assumption is. One can make the case that the really sad thing is the way families are dissolved so easily, and geographically separated so often, in the US.

    The fallout of all this emphasis on independence and separation of lives of family members is that it’s fairly likely for an old person here to die alone with kids who show no concern or very little concern for the parent housed in a convalescent home. The idea of “bringing mom and dad home” to live with the kids or for the kids to move back in with parents to care for parents is anathema to most Americans… not all, but most.

    Oct 11, 3:49 AM —

  12. Maddy | whittereronautism.com

    p.s. I really like that terribly annoying rolling widget on the top left of the screen with the latest hub postings. Is that something we could or should put on our own blogs?

    Oct 11, 4:08 AM —

  13. Leanne | mumkeepingsane.blogspot.com

    I think there’s a difference between having children at home who are contributing (in some way…I don’t necessarily mean financially) to the family and those who sit on the couch and eat their parents into debt while contributing nothing (except maybe whining).

    I would have no problem living with my children as adults as long as they don’t have a “you owe me” attitude or a sense of entitlement about it.

    Oct 11, 1:41 PM —

  14. Marie |

    I like the idea of a duplex, aka “mother-in-law’s apartment.” Living together but each having own space, and being as mutually supportive as each desires.

    Who says a “starting gun” has to fire? “And then you find ten years have got behind you” seems to refer to a cultural construct (“by the time you are 18/ 25/ 35 years old, you should have accomplished X and Y and Z”). I wonder if it also suggests that one wasn’t paying attention to the days as they were happening—and so where did they go? and how did I get here? and why am I not there?—and maybe one ought to pay more attention to what’s happening as it’s happening.

    Oct 11, 4:13 PM —

  15. Ian MacGregor |

    I let my emotins get the better of me, during my most recent posts. I apologize. I thoought people might be interested in some research being done on extracelluar proteins implicated in autism.

    http://www-ssrl.slac.stanford......utism.html

    Oct 11, 6:12 PM —

  16. Andy Morris | chanceforrosie.org.uk

    Please don’t take my post as a scam. I actually misunderstood where my post was going. My email was in fact intended as a personal email to the owner of the site requesting a link somewhere here to Rosie’s website to help sell calendars for our fundraiser.

    I found a couple of the previous posts a touch cynical – there are some decent people left in the world, you know – just trying to do the best for their children. Check the website out if you feel cynical – we put most of our waking lives into our daughter’s progress and have virtually no time for ourselves.

    We have to raise such a huge amount of money every year for Rosie so we knew we had to come out with a eye catching fund raising idea and if that seems stupid to some people, then so be it! At least we know we’re doing everything we feel is right for our daughter.

    Oct 11, 9:31 PM —

  17. Another Autism Mom | anotherautismmom.blogspot.com

    I love that song too, but to me it sounds more like a lament from someone in a midlife crisis because things didn’t turn out to be as exciting and happy as we’d hoped, probably due do wrong decisions or bad luck. Now that you clarified about the Roger Waters conversation with his Mom… Well, people become independent, move out, get a job and a family, and it still doesn’t mean they’ll be happy adults. I don’t know what our kids’ future will be like, but I hope that even if my child has to leave with me for the rest of my life, we can enjoy the situation as much as we can, and he’ll be a happy man having fun with his hobbies and other interests, maybe girlfriends or whatever. As far as I’m concerned the good side of this would be that I won’t be devasted that my son is moving away to a different state to go to college and I won’t ever see him except during holidays.

    Oct 11, 9:43 PM —

  18. Another Autism Mom | anotherautismmom.blogspot.com

    I meant “live with me”, sorry.

    Oct 11, 9:43 PM —

  19. Ian MacGregor

    For those of us with low-functioning children,the question is really concerns what happens to them once we can no longer take care of them. We have no idea of how muh progress they will make, but fear it won’t be enough to avoid being institutionalized, somethng that they might not mind at all. It is not the insitutionalization that we fear, but abuse of our children in these institutions.

    Oct 11, 10:20 PM —

  20. Ms. Clark |

    This is a fear of those of us with “middle functioning” children, too.

    The thing to do is to advocate for people to see autistics as humans NOW, otherwise when you are gone the average Joe will see your daughter as a monster, and monsters don’t have feelings. It doesn’t matter what you do to them, and it doesn’t matter if they die.

    Acceptance is your best chance of giving your child the best chance. The demonization of autism might destroy MY kid after I’m gone if it doesn’t stop, and I’m not going to sit still for it now.

    Oct 12, 2:57 AM —

  21. original cali biomed xprt |

    Thanks for that link Ian.

    Oct 12, 7:50 AM —

  22. Brett |

    Thanks to everyone for your comments so far (and please, keep them coming). After reading the comments, I had to go back and read my original post to make sure of what I had said. It seems that most people interpreted my reference to the “starting gun” as “going out and living on your own.” While that may be one option for some, it’s not really what I meant.

    I agree with Ms. Clark in her assessment of children living at home. In fact, I’m already looking at adding on an apartment (a “mother-in-law space”, if you like) so that may son(s) can continue to live with us.

    I was really thinking more along the lines of the true spirit of the song: how do we let our kids know it is time to live for themselves so that when 10 years have gone by they don’t have any regrets? I don’t really care about what society at large thinks they should have accomplished, I want my kids to be able to look forward at what they want, and back on what they’ve had and done, and not be left wanting.

    Life “beyond childhood” encompasses so much more than just living on your own.

    Oct 12, 7:32 PM —

  23. original cali biomed xprt |

    Just a side-note to Brett. The starting gun for me fired very near the HS you write of, however it was a little earlier than when you attended … ; ]

    Oct 12, 8:54 PM —

  24. Patrick |

    My apologies if my response was one of those considered cynical Andy.

    A google search does indeed return many hits for the Girls and the Calendar stunt.

    Would you mind letting us kow what special education programme in USA you have selected? (As reported on http://www.stroudnewsandjourna....._rosie.php ?)

    Oct 12, 9:26 PM —

  25. Tito Rajarshi Mukhopadhyay |

    I am planning in a long term way
    Till the moment of my last living day….
    ‘I would continue to live at home,
    Even when I am living my 60th birthday.’
    I discussed the plan (till here) with mother,
    She assured me that ‘Its okay.’
    .......
    This is not what I yet discussed
    But it islaid out thus till thus-
    Then as parting hours draw near
    And I would draw my last living year…
    I might go to a broad minded world,
    Who don’t mind applying Euthanasia I am told.
    I would smile a smiling death,
    And thank the doctor for my last end breath.

    – Tito Rajarshi Mukhopadhyay

    Oct 13, 3:46 PM —

  26. Andy Morris | chanceforrosie.org.uk

    Hi Patrick

    Thanks for the post! The program is called the ‘Growing Minds’ program and the method is a combination of interactive and directional approaces – a bit like ABA with warmth, play and fun! There is a link to their website from Rosie’s site which is www.chanceforrosie.org.uk.

    All the best to you, Andy :)

    Oct 13, 10:26 PM —

  27. Marie |

    [quote]how do we let our kids know it is time to live for themselves so that when 10 years have gone by they don’t have any regrets? I don’t really care about what society at large thinks they should have accomplished, I want my kids to be able to look forward at what they want, and back on what they’ve had and done, and not be left wanting.[/quote]
    Live that way right now. Talk about savings plans and what they’re for. Be open about family budgets and spending. Talk about plans—for tomorrow, for next week, for next year, what might be good to be doing in five years—and how to make them happen, or how to weigh this plan against that and make a choice (or do both?), what steps to take and how much time to estimate for accomplishing this or that goal (from learning to snap fingers or whistle to putting on a Thankgiving dinner to becoming a graphic designer or film editor).

    Starting gun started with the birth day, I think.

    I’m also thinking: When is it time to let your child know it’s time to start dressing himself? Or is that something that a parent even has to do? Maybe it’s something that a child just starts doing—some earlier, some later. Some might benefit from a suggestion like, “Hey, you can do this for yourself, if you like. Here’s how the buttons work, if you care to try it. [and later] Here are some community college courses that might interest you, if you’re serious about that filmography idea. And here’s how you can find out about more such classes for yourself.”

    I dunno. I might see it differently in a few years, but just now I’m thinking that, rather than looking for a certain signal that now it is the time to introduce the idea of independent living, it’s more like a natural progression from day one.

    Oct 14, 5:18 PM —

1 comment:

Brett said...

Hello,

I have some questions that I was hoping you could answer via e-mail. I was diagosed with AS at FAOBC towards the end of 2005 and things have been "interesting" ever since (I found your blog by googling "army officer" and "asperger syndrome" and found your post "Sun Tzu and the Art of the IEP" lol). Now I'm trying to figure out where to go from here. Would you mind e-mailing me at brett.m.donner@us.army.mil? Thank you.

V/R
1LT Brett Donner