Autism and the transition to adulthood – Whose life is it, anyway?

Today is an election day here in the U.S. The ability to participate in our government is one of the key transition points from adolescence to adulthood, but just one of many transitions that teens – and their parents – must make. For autistic teens, and their parents, this transition brings with it some unique challenges and considerations.

Over the past several years, I've written several pieces on this subject. In keeping with the spirit of the day and what it represents, it seems appropriate to repost this one.

I originally posted Whose life is it anyway? Thoughts on guardianship, autism, and growing old on 03 March 2006:

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As part of planning for the future, parents of autistic kids must consider many things. Key among them is this question of guardianship.

When a child in the United States turns 18 they are considered an adult, their own person. They can vote, they can enter into legally binding contracts, they can join the military (and if they are male they must
register with selective service), etc. In order to rescind this legal right, parents must petition the courts and establish alternative guardianship. Obviously, not a decision to be made lightly.

On the other end of the age spectrum, adult children often must make care decisions for their aging parents. Many times this results in these elderly parents living out their final days in a nursing home, with every aspect of their lives controlled by the administrators of the home. Again, not a decision to be made lightly. (I think we've all heard the horror stories.)

The film Almost Home, recently aired on PBS, talks about a different kind of way to run a nursing home.

ALMOST HOME offers an inside look at the lives of these residents, their families and those who care for them as each adjusts to the challenges of growing older. ALMOST HOME filmmakers Brad Lichtenstein and Lisa Gildehaus introduce couples bonded and divided by disability, children torn between caring for their dependent parents and their own families, nursing assistants doing difficult work for near-poverty wages and visionary nursing home director John George, who is committed to transforming his century-old hospital-like institution into a true home.

Under George's leadership, Saint John's On The Lake is reinventing its 135-year-old medical model of care (think hospital) with a social one (think home). His goal is to transform the way people see nursing homes—not as institutions of boredom and despair but as vibrant communities where residents live rich and fulfilling lives. To succeed, he will have to win over skeptical managers, resistant nurses, overworked and underpaid nursing assistants, complacent residents and often-overwhelmed family members.

The key change in my mind is that the residents here retain as much control as possible of their own lives. They can wake up when they want to, instead of the usual scheduled wake-ups. Meals are tailored as much as possible to what the residents desire, not a typical bland hospital menu. (If someone has lived a good 90 years, and wants some bacon for breakfast, they should be able to get bacon for breakfast!) They have a cocktail hour every Monday where *gasp* they can drink cocktails.

Whose life is it to live? It is the individual's, of course. But, as the parent of an autistic teenager, that is somewhat easier to say than to act on. Any thoughts from autistic adults (several of whom I've recently gained as readers) or parents of autistic adults that have already gone through this are greatly appreciated.

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Indulge your kid's passion, and build on their strengths

Consider this opening paragraph from the book Strengths Finder 2.0:

At its fundamentally flawed core, the aim of almost any learning program is to help us become who we are not. If you don't have natural talent with numbers, you're still forced to spend time in that area to attain a degree. If you're not very empathic, you get sent to a course designed to infuse empathy into your personality. From the cradle to the cubicle, we devote more time to our shortcomings than to our strengths.

Any autism parent - any parent, for that matter - will likely recognize that this is exactly what we tend to do with our autistic children. In fact, it is what is expected of us, to try to make our autistic children into someone they are not. But that doesn't mean that is what we should be doing.

The following originally appeared here in February 2006.

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Indulge your (kid's) obsession

I spent Saturday afternoon this weekend at a Yugi-oh regional tournament with my younger (non-autistic) son, who is 13. Though he was not the youngest duelist there, he was one of a handful of kids under 15 in a group of 80+ duelists. (In case you’re not familiar with Yugi-oh, participants are duelists, not ‘players.’) The ages ranged all the way up to 40+, with the bulk of them in their late teens through early twenties. All duelists were male, save one.

I have the feeling that if you were to observe many of these guys in a ‘normal’ environment – say your local high school – your first impression would be “outcast,” “nerd,” or something similar. They have long unkempt hair and a preference for black t-shirts. They keep to themselves, or a small group of like-minded friends. They are not the ‘social butterflies’ that seem to be demanded in that environment. In a word, they would appear to be “non-social” (ok, maybe that’s two words *-).

Put almost a hundred of them in a room together at a tournament where everyone is trying to prove they are the best duelist in town, though, and what you get is a room full of ‘social butterflies.’ As duelists finish their match, they congratulate each other on a match well played. They walk through the room, soaking in what others are doing. In between rounds, they seek each other out, talking strategy, asking about the cards they have (Yugi-oh is what they call a Trading Card Game). It doesn’t matter if you are good are bad, new or experienced. The only thing that matters is that you are interested (I should say obsessed) with the game.

The thing is, many parents I know don’t understand – and thus discourage – their kid’s obsession with this and other similar games. These parents can’t grasp the hours and hours their kids spend learning each card’s abilities, their strengths and weaknesses, how they can be used together, and how they can be used in response to an opponents actions, or the many more hours (and $$$) spent acquiring and sorting through cards to build the perfect deck. And of course, the many many hours spent practicing by dueling with friends, or in solo practice.

Wait a second. Those things sound an awful lot like what most kids go through when they find their obsession. Take a sport like football. Kids spend hours learning playbooks. They spend hours after school every day of the week at practice, sometimes on the weekend. They gather for games in the hope of proving they are the best. It’s just that these ‘obsessions’ are ‘mainstream’, so their parents proudly refer to them as their children’s ‘passions’ or ‘talents.’

Luke Jackson said it best (I’ve quoted this before, but it seemed worth repeating):

Q: When is an obsession not an obsession?

A: When it is about football.How unfair is that?! It seems that our society fully accepts the fact that a lot of men and boys 'eat, sleep and breathe' football and people seem to think that if someone doesn't, then they are not fully male. Stupid!

Girls are lucky enough to escape this football mania but I have noticed that teenage girls have to know almost every word of every song in the charts and who sang what and who is the fittest guy going, so I suppose an AS girl (or a non-AS one) that had interests other than that is likely to experience the same difficulties as a non-football crazy boy.

I am sure that if a parent went to a doctor and said that their teenage son wouldn't shut up about football, they would laugh and tell them that it was perfectly normal. It seems as if we all have to be the same.

Though I hate to engage in arm-chair neurology, I’d be willing to bet that if these duelists were ‘evaluated,’ quite a few of them would show up on the autism spectrum, likely as Aspies. That is, if they were evaluated in the general context that those types of evaluation are done – against the ‘norms’ of society today. Conduct their evaluation in the context of their world, the world in which they can indulge their passions, and I think they would show up as perfectly normal (whatever the hell that means).

In my thinking over the last week or so on what it means to be different, I seem to keep coming back to the same point over and over: it’s not our kids that have a problem; it’s the world they must live in that has the problem.
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Not in my backyard: Vaccines, autism and acceptable losses

In her post The AAP vs. Eli Stone (January 2008), Ginger Taylor at Adventures in Autism tells the AAP that her son is not "an acceptable loss in the war against TREATABLE viruses" (emphasis hers). The steel trap that is my mind (ha!) remembered that Ginger had brought this up before when talking about vaccines. In Where I stand on vaccines (June 2005), Ginger wrote:

The CDC’s vaccine policy is based on the principle that the good done for the many outweighs the harm to the few. And that is fine if you are making vaccine policy for 300 million people. But I am not responsible for holding back another Rubella epidemic; I am responsible for two little boys who just may fall into that sliver of the population that the CDC considers an acceptable loss. (my emphasis)

An anonymous commenter responds:

YOU are not responsible, but you do share that responsibility with all of us parents. If enough parents assumed your attitude, pertussis, mennigitis, and perhaps even measles would make a deadly comeback. I'm not saying you must vaccinate, the risks/benefits must be evaluated carefully. But if you choose not to, please acknowledge dropping your share of responsibility for the good of all children for what it is - selfish. Please note that I do not consider selfish anything more than a decision taking only you or your children into account. It does not mean you are an all-bad person.

I've thought about this very thing quite often when looking at the vaccine question. Does any single parent have any responsibility to "hold back another Rubella epidemic?" I've come to the conclusion that no, they don't. Though the commenter takes great pains to say being selfish doesn't make Ginger a bad person, the fact that he had say that at all points to the general feeling that being selfish is bad.

But, and this is a big but, everything that everyone does is for selfish reasons. I've written about this before in the context of behavior in the world of business, but the general principal is the same. Every action that we take, or influence, or try to make happen, we do because we want a benefit for ourselves or someone we care about. The Founding Fathers of the US knew this fact, and they also realized that this is the only way it can be if the fundamental freedoms they believed in were to be realized. (This is also why you can't, and shouldn't, try to get rid of Congressional 'ear-marks' .)

The obvious pop culture reference here is Star Trek II: The Wrath of Khan. Spock was right that the needs of the many outweigh the needs of the few, but Captain Kirk was just as right - maybe more so, considering what happens later - in not accepting this "axiom" in this case.

The AAP, and others, have gone overboard over Eli Stone, if you ask me, but this is how it should be. I'd expect nothing less if the tables were turned and the proverbial shoe were on the other foot.

And the verdict is...

... guilty on all counts.

While we wait for the verdict...

In May 2006, 3 year-old Katie McCarron was killed by her mother, Karen McCarron, who is on trial for the murder of her autistic daughter. The case is now with the jury, who have four options to choose from (guilty, not guilty, guilty but mentally ill and not guilty by reason of insanity) for each of the four counts McCarron faces. See Autism Vox for Kristina Chew's excellent coverage of the trial for more info.

I'm sure there will be plenty of analysis of the verdict once it comes in, the arguments in the case, and what it means to be autistic and the parent of an autistic child. But for now I'd like to repost something I put up in May 06, not long after Katie was killed. It was also around that time that I finally watched the Autism Speak's video, Autism Every Day.

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So what?

Ack!
Thbbbt!

That pretty much sums up my feelings over the past couple of weeks about autism news. I have the feeling this post is going to go long and wide, so consider yourself forewarned....

At last week's Senate confirmation hearings for President Bush's nominee for head of the CIA, GEN Michael Hayden was asked to comment on the value of 'targeted intelligence,' the process of gathering intelligence explicity supports a desired outcome. (If I remember correctly, it was asked by a Democratic Senator doing a bit of sneaky Bush-bashing.) GEN Hayden replied along the following lines - this is a paraphrase, I could not find an actual transcript:

I've got two great kids, teenagers. But if I wanted, I could put together a dossier on them that contained all the bad things they've ever done. This would be accurate, but would not tell the whole story. You would think these were the most rotten, evil kids on the planet. If all you are looking for, or expecting to see, is one aspect of a situation, then that is what you will get.

This exchange from the hearings kept popping into my mind as I read the many descriptions of the Autism Speaks video, Autism Every Day. I finally got around to watching that video today. Ack!! Thbbbt!!

This video is nothing if not targeted intelligence, the Autism Speaks equivalent of the 2003 State of the Union address and Secretary Powell's briefing to the UN on Iraq's weapons of mass destruction program. What is their goal? Well..., war of course. War on autism. But is this also a war on autistics? It's kind of hard to tell the difference.

About half way through the video, which to that point basically consists of a bunch autism parents - I should say autism MOTHERS - whining about how hard life is with autistic kids, I couldn't help think, "So what? Parenting is hard." In fact, I was going to write a bit about that, but Kev beat me to it:

No one is claiming parenting children is easy. It is not. No one is claiming that parenting children with special needs is easy. Its not. But at some point we have to say to ourselves – yeah OK, this is hard. We have it harder than parents of NT kids…..so what?

Moving past and getting on is as easy or as hard as you want to make it. I don’t want pity. I don’t want sympathy. What I want is understanding. Genuine comprehension. Cynically manipulative pieces like ‘Autism Every Day’ will not aid comprehension. It does not show reality. It shows the bad things. A lot of the bad things in this piece seemed induced either purposefully or by ignorance. I am not saying bad things don’t happen, I am saying they are far from the whole story.

Deja vu, anyone? (See the quote from GEN Hayden above.)

I was flabbergasted (to say the least) when one of the mothers in the video said that, except for the fact that she also had a non-autistic daughter, she would would have driven off the George Washington Bridge so her autistic daughter "wouldn't have to go to that school." Thbbbt!!! With the autistic daughter (8 or 9 years old) in the room with her. Ack! And then the non-autistic daughter said, "I wish I had a non-autistic sister." ...!!!... (words escape me here) Not I wish my sister weren't autistic, but I wish I had a different sister.

This of course leads into the story of the death of a 3 year old autistic girl at the hands of her mother. Much of the press, and most of the comments from the family and friends, seems to be along the lines of, "Poor woman, she was the mother of an autistic child and she just snapped. Please pray for her. It wasn't her fault."

Much of the whining (sorry, that's how it came across to this 13 year veteran of autism parenting) in the video was focused on how the autism negatively impacted the lives of the parents. "Sorry, I'd love to go get bagels with you, but I've got to go deal with my autistic child." "I couldn't keep the job I wanted." "This wasn't my choice. I'm not a therapist, I got drafted. I'm a parent of an autistic child."

Let me tell you a story.

A couple of days ago some friends watched their 6-year old son die, heard his last breath as he succumbed to terminal illness. About 3 weeks ago, their son's body began rejecting food from the tube. Nearly 6 months before that, he became unable to eat food (hence, the tube). For the past two years, he has been unable to move. An unbelievable amount of love and caring. Did they miss the things they could not do? Undoubtedly. Did it make their life hard? Yep. Did they whine about how miserable they were because of their sick child? Not a chance. Did they consider throwing him off a bridge? Puh-lease!

Life is hard. Parenting is hard. So what?
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As a rule I usually don't lash out at individuals or groups about their beliefs or actions, but this post was a rare exception to that rule. (So much so that I felt it necessary to apologize, kind of, in a follow on post.)

Autism and God

Occasionally I have posted on the topic of autism and religion. These have been very general thoughts about how the Church, the religious, and God (whichever may be yours) view autism and autistics.

Ginger Taylor, on the other hand, has written an in-depth discussion of autism from a Christian point of view in a series of posts she calls Autism in God's Economy. Originally posted last spring during Autism Awareness Month, she has re-posted them for the Christmas season.

Here's how Ginger describes the series:

Because so much is at stake, the autism discussion and debate grows louder and more fevered, often making it difficult for those involved to really take in various perspectives. Even when we do, they are all still flawed human perspectives. Even the best, brightest, wisest and most experienced of us do not have the whole story.

But God does.

So in “Autism in God’s Economy” over the next six days I will discuss a few things that the Bible tells us about God’s perspective on those with Autism and on the rest of us. This series is predicated on the deity of Christ and the inerrancy of Scripture, which may be controversial ideas to some of my regular visitors. If they are to you, I invite you to read on none the less, and take a look at what God of the Bible says. If you are a professing Christian, then this is an important series for you to read no matter how autism affects you.

The series includes, as Ginger mentions, six parts:

The Least of These - In God’s economy, the weak, the marginalized, the disenfranchised, the overlooked, the voiceless, the vulnerable, the sick, the oppressed, the grieving, the bullied, the exhausted, and those at the end of their rope are the ones who get into the VIP section. They are the ones who gain the attention and compassion of the God of the Universe.

Those with Autism - What Matthew 25 means to you whose autism has allowed you to be mistreated is profound. It means that not only does The God of the Universe see what happens to you, He stands behind you at all times taking careful note of all your interactions with others. He records who victimizes you, who ignores you and who works their butt off to get to know you give you what you need.

Parents of Autistic Children - Once you become the parent of a disabled child, you begin to see what that ‘blessing’ really means in concrete terms, because one of the first things that happens to you, in your early grief, is that you become grounded. All of the trivial distractions, the petty rivalries, the BS ego trips, the vain ambitions and the frivolities of life suddenly become very unimportant. The crap in your life starts to fall away and it is replaced by seriousness about things of true value.

Friends and Family - It is their innocence and vulnerability that God stands behinds and uses to judge those who come into their sphere of influence. It is precisely because they are so easy to dismiss and mistreat, that God watches closely to see which of us have extracted ourselves from our own self-centeredness and selfish ambitions to notice someone who is need and to bear their burden with them.

Those in Power over Those with Autism - If you have taken responsibility for any part of the life of someone with autism, or even if that responsibility has been thrust upon you, take this time to measure yourself. Have you lived up to the responsibilities that you have been given to the innocent and vulnerable lives that Jesus has chosen to represent Him for the purposes of His judgment in his absence?

For All of Us Who Have Failed in Our Duty - When those of us with autistic people in our lives take a hard, honest look at ourselves, we realize the question is not have we failed them, it is how often and how big have we failed them.

As fellow autism dad Wade Rankin says in his post about Ginger's series, "For anyone who has an interest in the spiritual side of this autism thing, or who may have questions about reconciling the notion of a benevolent God with the autism epidemic, it makes for good reading." Make sure you check out the comments discussion between Ginger and Jonathon for even more on the latter.

Autism book clubs on Shelfari.com

One of the various reasons I finally got around to posting my review of Portia Iverson's Strange Son was my signing up for an account at Shelfari.com, a social networking site to connect those who still engage in the fading activity of reading. As I was adding books to my shelf I wanted to add a review of at least one book, so I dusted off that review and posted it to Shelfari, as well as here (where it would, admittedly, reach a bit larger audience).

One of the other things that Shelfari provides is the ability to create groups, what seem to me to essentially be a virtual book club. I created one, Books by Autism Parents and Autistics, to provide a forum to discuss, well, books by autism parents and autistics. So far, the group is just me. I'd love to have some company. (hint hint ;-)

On a side note, I understand that there are several different sites for managing a book shelf and that converting from one to another is a bit of a pain. I actually went through this when switching from iRead within Facebook to Shelfari. (I wrote a bit about the myriad options, and headaches they cause (for me, at least) in Time out, please? last summer.) If you don't want to switch your entire shelf over to Shelfari, perhaps just come on over for the group discussion.

Hope to see you there.

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:

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 —

Autism is a Trait

This is the third 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.

- - -- --- -----

Driving yesterday evening, I passed a bus stop with a United Way advertisement with the slogan, "Autism is a trait, not a debilitation." Obviously, when I made my way back online, I tried to find out a bit more about this United Way Campaign.

Through Google, I found a link to the campaign on the United Way website. Unfortunately, when I tried the link I received a 404 error. Hopefully it comes back up soon.

There was also a link to a story in the Belleville (Illinois) News-Democrat about the spokesman of the campaign, Tyrin Rencher (pictured at right).

He is on posters, pamphlets and television screens all around the St. Louis region as one of the many faces of the United Way fundraising campaign this season.

Most people probably recognize Tyrin Rencher as the smiling young man in a red apron standing in the kitchen at Pasta Fare in Fairview Heights beneath the slogan: "Autism is a trait, not a debilitation."

Rencher, 27, of East St. Louis, has autism. He was diagnosed with autism at 2 1/2 years old and was enrolled in the Illinois Center for Autism in Fairview Heights when he was 3. He still receives services through the organization and was selected as a spokesman for the United Way campaign this year and as a spokesman for the Illinois Center for Autism.

The article also gives a bit of bit of Tyrin's history and what he's up to today (besides being a "celebrity"):

He is currently a junior at the University of Missouri St. Louis, where he is working toward a degree in business administration.

When talking to Rencher, a person quickly learns that he's a man determined to fulfill his dreams, in spite of the autism, and he is an example of the slogan over his head on the United Way posters.

"A lot of the stuff I planned is coming true and I'm speechless that it is all happening," he said. "I want to open up a restaurant with my degree. Something small, like (Pasta Fare.)"

He is thankful the Illinois Center of Autism was around when he was diagnosed when he was a toddler.

"Without them, I would be lost," he said. "I really wouldn't be in a position to go to college right now."

He is learning to live on his own for the first time, something that he sometimes finds difficult.

"But I'm learning, it's tough, but I'm trying to adjust to living on my own," Rencher said. "One of the things my family has taught me is perseverance, and I do that every day."

I love to see "good news" stories about autism, and this is one of the "goodest" I've seen in a while: it shows an autistic adult making his way in the world, it shows that an autistic person's dreams and life aspirations are just like the rest of ours, and it shows an organization dedicated to helping people make their way in the world AS THEY ARE instead of trying to fundamentally change them.

----- --- -- - -

Original comments:

#

AB | aoskoli.blogspot.com

That’s amazing. A mainstream organization like the United Way gets it right. That is so enormously encouraging.

Oct 6, 11:43 PM — [ Edit | Delete | Unapprove | Approve | Spam
#

Christschool |

If anyone is able to find the link to the United Way Campaign with the slogan mentioned, please contact me as I would love to make a video of this. I tried the wayback machine with the broken link but that didn’t work.

Oct 7, 12:17 AM — [ Edit | Delete | Unapprove | Approve | Spam
#

Ms. Clark |

Christschool, I don’t know if this was what you had in mind.

http://www.stl.unitedway.org/tyrin.aspx

http://www.stl.unitedway.org/logos.aspx

Oct 7, 12:52 AM — [ Edit | Delete | Unapprove | Approve | Spam
#

Club 166 | club166.blogspot.com

Ha! I almost blogged about this myself when I saw it. It is indeed a good thing, and I’m going to drop the local United Way a note with my donation this year.

I had to read it twice over, I was so surprised. An autistic adult going to college and getting real world training and experience. What’s not to like about that?

The only link that I found about this on the United Way site was here. I’ve seen the video that goes with this story once on TV, but couldn’t find the video on their site.

Joe

Oct 7, 12:53 AM — [ Edit | Delete | Unapprove | Approve | Spam
#

Club 166 | club166.blogspot.com

Ah! While I was cutting and pasting (incorrectly) Camille posted the link that I was going to.

Joe

Oct 7, 12:55 AM — [ Edit | Delete | Unapprove | Approve | Spam
#

Club 166 | club166.blogspot.com

Found it! Here’s the video that I saw:

http://www.stl.unitedway.org/2.....0_240.aspx

Oct 7, 1:24 AM — [ Edit | Delete | Unapprove | Approve | Spam
#

Ms. Clark |

Thanks, Club 166!

Oct 7, 2:12 AM — [ Edit | Delete | Unapprove | Approve | Spam
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suzanne | blogger.com/profile/02732095611947394379

Thanks for sharing this.

Oct 7, 3:19 AM — [ Edit | Delete | Unapprove | Approve | Spam
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Kristina | autismvox.com

Hope to read more stories like this and not to feel surprised!

Oct 7, 5:20 AM — [ Edit | Delete | Unapprove | Approve | Spam
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Luai_lashire | luai-lashire.deviantart.com

I don’t mean to belittle the united way campaign or the article, both of which are very good- but I really, really wish they hadn’t said “in spite of his autism”. It’s the only part of the article that I don’t like, which, compared to the rest of the media, is amazing. Like the other people here, I sincerely hope that this keeps going on and that we see more of this kind of thing! :)

Oct 7, 2:08 PM — [ Edit | Delete | Unapprove | Approve | Spam
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Joseph | autismnaturalvariation.blogspot.com

Hopefully things like “in spite of his autism” will get phased out eventually. It’s really no different to saying “in spite of being black” or something of the sort.

Oct 7, 2:44 PM — [ Edit | Delete | Unapprove | Approve | Spam
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jypsy | therunman.blogspot.com

cached version of the link http://64.233.167.104/search?q.....=firefox-a

Oct 7, 4:59 PM — [ Edit | Delete | Unapprove | Approve | Spam
#

Gonzo |

Good point, Joseph.

Oct 7, 5:32 PM — [ Edit | Delete | Unapprove | Approve | Spam
#

cz |

If the United Way site is down:

http://www.stl.unitedway.org/2.....0_240.aspx

You can also see the video on You Tube:

http://www.youtube.com/watch?v=6yaTd4jGu48

Tyrin is the second story in the video.

Oct 7, 7:46 PM — [ Edit | Delete | Unapprove | Approve | Spam
#

VAB | aoskoli.blogspot.com

In the spirit of letting people know when they are doing something I appreciate, I wrote to the media coordinator and thanked her. She wrote right back. Here is our email conversation.

———To: Carrie Zukoski
Subject: Autism is a trait – not a debilitation

Hi,

As a father of a child with autism, I would just like to say how much I
appreciate your publicity, featured here:
http://www.stl.unitedway.org/tyrin.aspx

which I heard about here: http://leftbrainrightbrain.co.uk/?p=687

These days, it is increasingly common to hear autism described as a horror when, in fact, it is as your publicity says, a trait and, in many respects, a very fine one. People need to understand that. Thank you for getting the message out.
——-
Thank you so much for your note. That really means a lot to us. And Tyrin is a great guy – it’s been fun to work with him through this!

I appreciate you sharing the link to the blog too. I will definitely share this with my co-workers.

Carrie

Oct 7, 8:59 PM — [ Edit | Delete | Unapprove | Approve | Spam
#

Elissa managingautism.com

We definitely need more good news stories

Oct 8, 11:03 AM — [ Edit | Delete | Unapprove | Approve | Spam
#

Kate Kromann stl.unitedway.org/tyrin.aspx

Good morning! Thanks for mentioning Tyrin’s article here. Unfortunately, you seem to have caught us during our Web site upgrade this past weekend! Tyrin’s story is indeed online, at this address now:
http://www.stl.unitedway.org/tyrin.aspx

The video is on YouTube, linked on CZ’s post above, and to watch it from our Web site, click the Harley photo on the left side of the page.

I think your point about “in spite of his autism” is a great one, Luai. We certainly made an effort in our stories not include phrases like that. But of course, we can’t control what they print in the media :-)

Thanks for blogging about this! Do you mind if we link to your site?

Kate Kromann
E-Communications Director
United Way of Greater St. Louis

Oct 8, 12:32 PM — [ Edit | Delete | Unapprove | Approve | Spam
#

Brett

Kate,

Please feel free to link to my post about Tyrin.

While I can’t really speak for the site as a whole, I don’t think there would be any objection from the Left Brain / Right Brain team if you linked to the site from the United Way’s site.

Brett

Oct 9, 1:38 PM — [ Edit | Delete | Unapprove | Approve | Spam

Sun Tzu and the Art of the IEP`

As a young Army officer, I read Sun Tzu's Art of War many times (in different versions). When I transitioned into the civilian workforce, I realized that many of the ideas would translate to the world of business. (Not literally, of course. For example, Sun Tzu's demonstration of leadership ability using the Emperor's concubines as soldiers.)

The Art of War can also be applied to many other common activities, such as the IEP. You can pull from many quotes, but here is my favorite:

Know the enemy and know yourself; in a hundred battles you will never be in peril. When you are ignorant of the enemy, but know yourself, your chances of winning or losing are equal. If ignorant both of your enemy and yourself, you are certain in every battle to be in peril.

Of course, this may need some translation* into more relevant wording. Such as:

Know the district administration and their stated goals and resources, and know your rights and what is best for your child; in a hundred IEP meetings you will never fail to get what you need.

When you are ignorant of what the district's goals or resources are, but know your rights and your child's needs, your chances of getting what you need in the IEP are 50/50.

If you are ignorant of both the district's goals/resources and your rights and needs of your child, you are certain in every IEP meeting to get what you get, and probably not what you really need.

Of course, this important piece of advice can just as easily be translated into the school district perspective, I'll leave that exercise to you.

Based on my personal experience, conversations with other parents, and conversations in the blogosphere, my guess is that most people (from both sides) go into IEP meetings knowing themselves, but not their "enemy." As a result, we often see winners and losers in the outcomes of IEPs, the result of hard fought battles that leave everyone bitter and exhausted.

What would happen if both sides heeded this advice and came in knowing themselves and the "enemy"? According to Sun Tzu, both should expect to win. But both sides can't "win", can they?

To that I answer a resounding, "Yes, of course both sides can win." Wouldn't that be a nice change?

* (If you are interested in some thoughts on translation within a language, check out my post Knowledge in Translation on my No Straight Lines blog.)
- - -- --- -----

Autism dads and IEPs

Last summer in the post "Men must attend IEP meetings", I quoted Charles Fox of the Special Education Law Blog on the important role men can (should) play in the IEP process. With the beginning of the school year and IEP season looming, I felt it appropriate to reprint Fox's quote:

Fathers and men too often fail to realize that sometimes just showing up at a meeting in support of the child can make an enormous difference. In my list of essential advocacy points, I list that 'men must attend meetings.' [number 11] I was actually accused of being a male chauvinist for stating this position at a parent training.

What was lost in translation was not that women are incompetent advocates because nothing could be more untrue; rather, that the dynamic of the meeting can often go differently if the father, uncle, grandfather, brother or even male co-worker or friend comes to a meeting or mediation.

This post was brought back to mind for me by the blog post Gender Bias and Autism Dads at About.com:Autism -

Have you ever been treated like a second-rate member of an IEP or school meeting? Of course, right? But how about a second-rate parent? Have you ever had to say, “Umm, I’m here too” or “Hey, I’m also the parent” when the faculty (in my case, all or predominately female) ignore you completely and speak to the other parent without acknowledging your existence. Or even worse, have you ever endured the cruel “Dad” jokes, when these so-called professionals assume the mother does all of the dirty work (cooking, cleaning, shopping, taking care of the child, therapies, researching, fighting school districts, etc.) while you escape to the normalcy of your 9-5?

Fortunately, I've never had to endure this. The IEP teams we've worked with over the years have all been true professionals, treating us as equals in the process. If anything, most were pleased to see a father taking such an interest. (Of course, it has helped that through the years I've had jobs that gave me the flexibility to attend.)

To be honest, I've had a more difficult time trying to be an involved father in the PTO's of my non-autistic son. I seem to be the only father that the mothers had ever seen express an interest in being part of the PTO. This made for some interesting, sometimes uncomfortable initial meetings as they tried to figure me out. (It took me a while in one group to get them to stop calling me Mr. Miller!) Eventually, I became just one of the gals (in a manner of speaking ;-) ).

I know that, statistically speaking, mothers tend to be the primary care givers and the ones who must work through the IEP process and all that it entails. I also know that divorce rates among parents of autistic children are high, again with mothers typically (not always) the ones who must take care of the autistic child. *

But I'm here to tell you - and I know a few guys out there who will back me up - that autism dads are here, and we care, and we'll let our IEP teams know that we're here and we care if they try to ignore or marginalize us.

* On the subject of autism divorce, check out First National Program Launched to Combat Divorce Rates in Autism Community in Medical News Today and the Family First page on the NAA site.
= = == === =====

Trampoline and Tumbling

It may not show here, but I have been giving quite a bit of thought to autism and related concerns lately (it is, after all, IEP season). I've not written here, though, mainly due to numerous other commitments over the last couple of months. One of those commitments has been setting up the new blog, The Tramp and Tumble Blog.

My younger son is on the St. Louis Elite team, and the National Championships are quickly approaching. As much as we love it, though, Trampoline and Tumbling is not well known as a competitive activity (unlike rival activities Gymnastics [which TnT is actually a subset of] and cheerleading), so I've been working with the coach at St. Louis Elite to help spread the word. Tramp and Tumble is a first step.

Trampoline has long been a part of our household. We found, as many autism parents do, that the trampoline is incredibly valuable to our autistic children. We couldn't get by without it. (And, yes, we've spent many a cold morning "shoveling" the trampoline after we finish the driveway!) Having the trampoline around is also what led our youngest into the sport, so it has worked out all around.

For a little more on the joy of tumbling, and the joy of coaching, with a bit of autism flavor, check out these posts from Kassiane.

"It's an odd life, but a good one"

Parents of the Autistic Weigh Lifelong Care Options on this morning's Morning Edition on NPR discusses many of the things that I've discussed here before: the need for estate planning and trusts, thoughts on how your adult child will live, potential interactions with law enforcement.

What struck me the most about the story, though, was how autism was portrayed and - more importantly - how the parents in the story have responded to life with autism. The quote I used for the title of this post - "It's an odd life, but a good one" - pretty much sums it up.

Finally, a story about autism in the national media that doesn't focus on the doom-and-gloom, woe-is-me (I?), "my child is gone" view of autism that is so prevalent in the media today. Could this be the start of a new trend?

Let's hope so.

Event Notice: Autism 101 in St. Louis

Autism 101, a panel discussion about autism, will be at 7 p.m. April 18 at the Logos School, 9137 Old Bonhomme Road, Olivette. [Flyer (MS Word)]

The panel will explore topics such as relationship development intervention, applied behavioral analysis, neurology and sensory and feeding issues associated with autism.

Among speakers will be Dr. Garrett Burris of Child Neurology Associates, Colin Peeler of Behavior Solutions, Sheree Behrndt of Sensory Solutions and Sue Lindhorst of Speech Language Services.

Autism Speaks and Missouri Families for Effective Autism Treatment will sponsor the event.

Those who want to attend must register by Wednesday. To register, click on Upcoming Events on the website, www.autismwalk.org/stlouis. For more information, call 314-989-1003.

Diagnosis: Autism - nothing new on 60 minutes

A quick follow up to 29 Marbles: Autism on 60 Minutes - 18 Feb 07 . My first thoughts after watching the 60 Minutes piece Diagnosis: Autism on Sunday night was, "Wow, this was a non-event."

Maybe it's just me, and the fact that over the past year I've been soaking in just about every autism story, theory, etc and reading several autism related books, but the show didn't seem to shed any new light on anything.

Of course, if I were the parent of a recently diagnosed child, or (gasp) the parent of a 6-12 month old who wasn't responding when I called his name, it would have been a different story. But what exactly would I have learned?

Every child is unique

Yesterday, abfh wrote something that captures perfectly how I feel about being a parent - not just of an autistic son, but of both my kids (emphasis is mine):

Children are always different from their parents and from one another in a great many ways, and each child is uncharted territory. No one ever knows how well they can deal with parenting any child. It's always a matter of gaining experience on the job, observing how the child grows and learns, and loving the child enough to let the natural process of growth take place, unconstrained by the parents' needs and assumptions.

This has now found a place in my trusty notebook of things I want to have handy. If anyone asks me how I "deal" with parenting an autistic child, I'll simply show them this.

Action FOR Autism

Mike? Hmm, that's a new person leaving comments. Good comments. I wonder what his blog looks like. Action For Autism, nice name. Wow, this is good stuff. He's been blogging for how long, over a year? Over 27,000 hits? And he's written some autism books? Have I been sleeping, or what?

That was my train of thought as I, well you can tell what I was doing.

It never ceases to amaze me that there is so much good stuff out there on autism, and I am continually frustrated that I'll never be able to find it all (and even if I did I'd never get to read it all).

If you've not seen Mike Stanton's blog Action for Autism, do yourself a favor and check it out.

Whose life is it anyway? Thoughts on guardianship, autism, and growing old

As part of planning for the future, parents of autistic kids must consider many things. Key among them is this question of guardianship.

When a child in the United States turns 18 they are considered an adult, their own person. They can vote, they can enter into legally binding contracts, they can join the military (and if they are male they must register with selective service), etc. In order to rescind this legal right, parents must petition the courts and establish alternative guardianship. Obviously not a decision to be made lightly.

On the other end of the age spectrum, adult children often must make care decisions for their aging parents. Many times this results in these elderly parents living out their final days in a nursing home, with every aspect of their lives controlled by the administrators of the home. Again, not a decision to be made lightly. (I think we've all heard the horror stories.)

The film Almost Home, recently aired on PBS, talks about a different kind of way to run a nursing home.

ALMOST HOME offers an inside look at the lives of these residents, their families and those who care for them as each adjusts to the challenges of growing older. ALMOST HOME filmmakers Brad Lichtenstein and Lisa Gildehaus introduce couples bonded and divided by disability, children torn between caring for their dependent parents and their own families, nursing assistants doing difficult work for near-poverty wages and visionary nursing home director John George, who is committed to transforming his century-old hospital-like institution into a true home.

Under George’s leadership, Saint John’s On The Lake is reinventing its 135-year-old medical model of care (think hospital) with a social one (think home). His goal is to transform the way people see nursing homes—not as institutions of boredom and despair but as vibrant communities where residents live rich and fulfilling lives. To succeed, he will have to win over skeptical managers, resistant nurses, overworked and underpaid nursing assistants, complacent residents and often-overwhelmed family members.

The key change in my mind is that the residents here retain as much control as possible of their own lives. They can wake up when they want to, instead of the usual scheduled wake-ups. Meals are tailored as much as possible to what the residents desire, not a typical bland hospital menu. (If someone has lived a good 90 years, and wants some bacon for breakfast, they should be able to get bacon for breakfast!) They have a cocktail hour every Monday where *gasp* they can drink cocktails.

Whose life is it to live? It is the individual's, of course. But, as the parent of an autistic teenager, that is somewhat easier to say than to act on. Any thoughts from autistic adults (several of whom I've recently gained as readers) or parents of autistic adults that have already gone through this are greatly appreciated.

tagged as: Autism, Asperger's Syndrome, Guardianship, Nursing Homes, Almost Home (film)