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Autism takes the stage on So You Think You Can Dance

June 8, 2012 By Leave a Comment

The Season 9 premier of So You Think You Can Dance was, as usual for their audition episodes, edited in such a way that the audience is left anticipating great things from some of the teaser-clipped auditions, and painful-to-watch-for-one-reason-or-another things, from others.  This stylistic trend continues in how they lead into some of the auditions with introductions.  As an audience, your expectations are manipulated — occasionally to the end of surprising you (everyone wants to be the last person to stop clapping for the lesson in not making assumptions about who is worth clapping for) — but more often to keep a hook in the various kinds of audience that talent competitions draw.  And….it’s sad but true….some people eat up these audition episodes not because they feel a prideful itch to discover and predict the next great talent, but because they get a rise off of laughing at those who — more clearly to them than the contestants themselves, obviously — don’t quite have it.

Now, I love the show.  I don’t especially care about the judging….in fact, some of the judges are much of the reason why I wish they’d release — even sell — high-quality clips of the performances alone in the way that music tracks are released as mp3s, so that you could just compile a video playlist of your favorite bits.  (I tried suggesting this to FOX, but I got an e-mail notification that they deleted my missive without reading it.)  I love watching the performances, though.  Once upon a time, before my bones finished confusing doctors, I danced, and this vicarious edge to my enjoyment only adds to it.  I am always torn, however, about watching the audition episodes.  On the one hand, I’m hungry for the mouthfuls of stunning artistry that never make it into the final banquet.  On the other hand, I typically become livid over how some of the entrants are treated, mocked in production editing if not also openly on stage.  Sure, some of them make me a bit twitchy, and not in a Twitch sort of way.  On the other hand, so many of them….not just don’t know better, but CAN’T know better, not on their own.

If you know what to look for — sometimes even if you don’t — I guess really, if you’re NOT simply looking for a cruel laugh — you can just TELL, you know?  You can tell that some of the entrants are, for one reason or another, at a disadvantage in being able to realistically hold their skill and/or talent up against the standards of the show.  Longtime fans of the show probably remember Dave Kenneth “Sex” Soller.  I didn’t want to smack that poor man for continuing to come back.  I considered whether or not I should want to smack his mother.  On the one hand, I think she knew that she was setting her son up for annual, mass-media humiliation.  On the other hand, I think she knew that he didn’t ever feel that humiliation as the rest of us saw it, only the persistent drive and confidence and joy at what he was doing there, that infuriated the judges so.  In any event, he’s just an easy example.  There have been others that, since I don’t remember their names and they didn’t keep coming back, they are harder to track down clips of.  The thing is, these people….these PEOPLE….who have intellectual, psychological and/or neurological disabilities….they just keep popping up, on this and other talent shows.  And you know what?  That’s well and good, because I’d rather live in a world where they can test themselves against a challenge they aren’t ready to meet, than in a world where they don’t have that opportunity.  My issue is that they are almost never handled with insight, or treated with respect, and it’s rarely because their personalities are horribly abrasive.  It’s just taken for granted that they should know better, or that the only reason they don’t believe whoever surely told them better is because they are arrogant, or because they simply have no taste, no sense, for no reason, or perhaps because they get a kick out of “wasting other people’s time”…

Fast forward again to the SYTYCD Season 9 premier, and the audition (shown above) of freestyle dancer Sam Shreffler.  The public at large is set up to brace themselves for a laugh at the young man’s expense, to begin their groaning and eye rolling before the commercial break and to look forward to finishing it.  The judges, when he first takes the stage, appear ready to do the same.  And then….THEN….then he clues them in on the fact that he has Autism.  Well now.  That changes things.  They are AWARE.  Their attitude towards him immediately changes.  It is even just vaguely appropriate, and the whole theater backs them up.  We don’t all have to feel foolish or guilty any more, we can all feel good about how things turned out.

Or can we?  I feel pretty good for young Mr. Shreffler.  He had a positive, affirming experience, a sense of acceptance and approval, and encouragement to pursue a form of self-expression that comes naturally to him and brings him joy.  I do not, however, necessarily feel any better about the judges or producers of the show.  I won’t until I see someone get up on that stage that DOESN’T hand them a societal instruction manual on how to be disability-conscious, and yet still gets treated in accordance with one.

They were thoughtful, but did it actually make them think?

Of course, it begs the question….at least, for those of us who are aware that we live in a world of invisible disabilities, it does….of how they could know, with rating-confidence, that they were always making the right calls about when to enforce such a new policy of NOT being *ssholes to disabled people, should they ever adopt one.  They might have to take a real risk, and focus on fostering viewer appeal without actually being *ssholes to ANYONE.

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Amelia Rivera and the issue almost everyone is overlooking

February 15, 2012 By Leave a Comment

I didn’t end up writing about the Amelia Rivera controversy as I had intended.  Most of you can probably imagine, at least in tone, what I would say.  You know what I wish I’d seen more of in the things other bloggers, news networks, etc., DID and ARE writing on the issue, though?  Information, or links to such, about the issue(s) of organ/tissue donation and transplantation at large.  So, I think I’m going to cover that base….or at least point to it….since I haven’t noticed much of anyone else doing so — except tangentially in a few “defenses” from the hospital that initially denied the child’s transplant, where pretty much anyone looking that far wasn’t going to see it as anything but a scapegoat.  No matter your stance on the Riveras’ case, I don’t think it’s quite right to formulate it without first having a healthy understanding of the broader context into which their experience falls.  Am I an expert on this issue?  Nope.  But I do have some experience with it, care of having a variety of friends and relatives who did — or failed to — or still need to receive another chance at life, care of donated blood and/or live-donor or cadaver transplants.  Before being the mother of a neuro-disabled child who was born a medically fragile preemie, I was, oh, the sister of one of the most complicated liver transplant cases in history-to-that-point.  There is one moral all of the stories share, one key point in the deluge of relevant information.  It comes down, in a way, to supply and demand.

As long as there is a greater need for healthy blood, tissue and organs than there are donations to meet all of those match-required needs, choices between potential recipients are going to have to be made.  Sometimes those choices are going to infuriate the masses, and sometimes a right to life will be prioritized with barely a sigh, a whisper, and one shuddering sob.  Even when all the “right” choices are made….some one is going to die, because some one else, higher up on the waiting list, was given the organ that might otherwise have been a match for them, in time.

Are you getting this?  If there were enough donations, the chances are significantly greater that no “choice” about Amelia’s transplant would’ve had to have been made, because there would have been enough matched kidneys to go around for everyone who needed one with her health’s level of immediacy.  Debating the so-called relative value of her life might well have been a moot point (regardless of whether or not you feel it should be, even as things are now), because offering her a chance for a longer and better life would not have to have meant doling out death to someone else at the same time.  If there were enough donations, the chances are significantly greater that whether Amelia was granted her transplant sooner or later, it would not have to mean someone else wouldn’t get theirs, further down the line, either.

Every single one of us — excepting a few of the medically bizarre — constantly makes new blood, new platelets, new plasma, new bone marrow, etc.  Not all body parts are regenerated naturally in a healthy body, but many are.  Now, I’m not going to get into various religious strictures (or sometimes inaccurate beliefs about some of them) as pertaining to donation.  That’s a whole ‘nother can of worms.  From a purely physical standpoint, almost every single person alive could donate at least SOMETHING that would help SAVE SOMEONE, without any significant….if any at all….medical detriment.  When it comes to many things, they could do so REGULARLY.  Again, we’re not even talking about organs the body has more of than it strictly needs, or organs that might at least partially regenerate, here.  We’re talking about things that any given healthy body could, or  is going to, completely replace within a month or two, ANYWAY.  And then, of course, you’ve got the fact that every single one of us is going to die, and — again, spiritual beliefs aside — none of us are going to be losing so much as a more energetic day, over donating body parts at that point.  Do you how many lives can be changed by one carte-blanche organ and tissue donation card?  Look it up, I dare you.

It shouldn’t have to be a dare, but I know it is.  The whole issue is remarkably taboo, except for when a particular case strikes a personal chord for people.  Back in high school I wrote an article for my school’s science newsletter, addressing a variety of popular rumors and beliefs relating to donation and transplantation.  It was edited into oblivion, judged to be too harsh and touchy a subject for teenagers.  Within a few years, several of the students at my school, who would have been students at the time the educational newsletter was distributed, died in car accidents.  None of them were donors, but if any of them HAD been lead towards being so by actually learning about the issue?!….Their gift would have saved the lives of several OTHER kids.  The DMV is often the first and only place people even hear that donor lists EXIST, and I’ve yet to go to a DMV that allowed information related to it, to be made available there.  There are some places that will sport and distribute red ribbons for HIV/AIDS awareness, but are squeamish about inquiries into whether they’d consider green ribbons.  (At the time of my sister’s transplant, green ribbons “belonged” to Organ Donation and Transplantation awareness month, in April.)  Yep, that’s right….the issue is judged to be more inappropriate, more controversial, more uncomfortable and awkward to address, than AIDS is.

Do I believe that Amelia’s life is worth less than that of any other little girl?  No, of-freaking-course not.  I also don’t believe that it’s necessarily worth more.  The whole thing makes me sick, but part of that soul-nausea comes from the awareness that there are thousands of people screaming bloody murder about the fact that one special needs child is being judged as less practical a choice as a recipient, all while doing nothing in the grander scheme to make such judgements unnecessary.  As many people are injured, have congenital defects, are afflicted with disease or specific degenerations of age….THERE ARE FAR MORE PEOPLE, AT ANY GIVEN TIME, WHO AREN’T.  If our culture was less ignorant, less afraid, less selfish, these things wouldn’t have to make the news.

I could spend hours providing links to different informational and registry sites.  Later on, when Ash doesn’t have yet another cold and is sleeping better, I might.  For now, I’m going to make a heartfelt plea for you to go looking for some.  Start with links off of hospital sites, as those are likely to have more reliable and accurate information.  Educate yourselves.  Educate each other.  Whether or not you’ve read about it, lives are depending on it.

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World Aids Day — are your children aware?

December 1, 2011 By 2 Comments

Image found here.

For about a quarter to a third of the world’s population (and that’s just an estimate of the actual Christians who celebrate Christmas), it’s, “Well, now we have no excuse not to get our butts in gear and prepare for Christmas” Day.  For the majority of people with Seasonal Affective Disorder, it’s, “Thank goodness there are only 20 more days until the Winter Solstice, and then we’ll start getting more daylight again” Day.  Both of those carry with them a certain amount of anxiety, and a certain amount of hope.  The same might be said for the formal assignment (by the World Health Organization, in 1988) of this date — World Aids Day.

Yeah, you heard me.  I’m talking about AIDS.  The sad thing is, that will still shock people.  It will also confuse some of them.  When I mentioned on Twitter earlier that I was going to be doing this feature, I started getting direct messages from people asking why I would focus on this kind of subject when my topic here is supposed to be “Special Needs Kids”.  Well, that’s one of the easier questions I’ve had to answer.  Maybe the reason has something to do with the fact that census data from 2007 shows 563 new cases of AIDS in children up to the age of 19, (in the United States and District of Colombia,) and 16,467 cumulative estimated cases for the same age range, between the recognized US outbreak of the viral epidemic in 1981, and 2007.  3,792 of those children were under the age of 13.  The vast majority of these children acquired HIV from their mothers during pregnancy, labor, delivery or breastfeeding, which rather dings the argument that a discussion about HIV and AIDS with or about children who have the disease necessitates immediate discussion of drug use, unprotected sex (and good grief, no, not just “gay sex”), etc. — though obviously, plenty of arguments can be made for (and there’s no avoiding the “against”, either, yes I know, I’m braced for your comments) considering discussions about those means of contracting the virus that can be controlled.  It’s true, children do not comprise a large percentage of AIDS cases, and, in fact, the numbers are decreasing.  During 2006 there were an estimated 28 pediatric AIDS diagnoses, compared to 195 in 1999 and 896 in 1992.  (The decline in pediatric AIDS incidence is associated with more HIV testing of pregnant women and the use of antiretroviral drugs such as zidovudine (AZT) by HIV-infected pregnant women and their newborn infants.) All the same, the numbers can’t be denied, and should not be ignored.

And, of course, those are just some numbers for children who have AIDS themselves.  (If you don’t think they count as special-needs kids, please think again.) As President Obama noted in his proclamation, “With an infection occurring every nine-and-a-half minutes in America, there are more than one million individuals estimated to be living with the disease in our country. Of those currently infected, one in five does not know they have the condition, and the majority of new infections are spread by people who are unaware of their own status. HIV/AIDS does not discriminate as it infiltrates neighborhoods and communities. Americans of any gender, age, ethnicity, income, or sexual orientation can and are contracting the disease.”  Guess what?  That means that even if your child doesn’t have the disease, they very well might know someone who does.  Directly or indirectly, our children are living with this disease.

Image pulled from this article.

And yet, while the United States is turning from fear towards respect when it comes to AIDS — with the Centers for Disease Control & Prevention reporting that the 1987 policy barring entry by HIV-positive visitors and immigrants will be overturned (effective early next year), according to President Obama, and that with the repeal of the ban, the International AIDS Society will hold the 2012 International AIDS Conference in Washington, D.C. — we’re still big fans of hiding when it comes to our children.  Did you hear the rumor about the world’s first HIV-positive Muppet?  Yeah, um….it’s not a rumor.  Introduced in 2002 in Takalani Sesame, the South African Sesame Street co-production, the character of Kami made the international news, and has since appeared at the United Nations UNICEF events, at the World Bank, and at the Peabody Awards.  She was interviewed by Katie Couric on NBC news, and starred in a commercial with Bill Clinton.  The yellow-furred, eternally-five-year-old monster has been named a UNICEF Ambassador and Champion for Children and has appeared in Takalani segments alongside, among others, Desmond Tutu and Nelson Mandela.  With a name derived from Kamogelo — which means “acceptance” or “welcome” in Setswana, Zulu, and Sesotho – the orphaned Kami, (who is not only HIV-positive but lost her mother to HIV/AIDS,) acts as a strong role model in South Africa, providing hope for 28,000 HIV-positive children and 1.4 million orphans of the disease.  She deals with the insecurities related to acceptance, she talks about coping and loss, and she teaches about the disease in age-relevant ways, like showing that it’s ok to hug someone that has HIV, without fear.  Sounds pretty threatening, huh?

Besides, the USA-based Sesame Street’s 40 years on PBS, has never really pulled a lot of punches.  They have tackled sensitive subjects such as death, divorce, pregnancy and childbirth, lying, stealing, racism, and gender stereotyping. (In some countries’ Henson co-productions of the show, difficult and painful political situations, even including the bloody conflict between Israel and Palestine, have also been depicted in an age-appropriate manner.) So when Kami was reportedly originally presented by Joel Schneider at the 14th International AIDS Conference in Barcelona, Spain in 2002, media reports at that time gave many the impression that this character was proposed for the American version of the program.  I mean, after all, we do have those children dealing with HIV/AIDS here.  But no.  Nevermind that when you’re talking about a communicable disease, awareness….for which actual TALKING helps….can make a monumental difference, both in terms of slowing the spread of the disease, and in terms of improving the quality of life of those who already are touched by it.  This subject was still too taboo, too inappropriate for American children.  Sparks flew from conservatives, controversy flared, and Republican congressmen Billy Tauzin, Chip Pickering, Fred Upton, Joe Barton, Richard Burr and Cliff Stearns cautioned PBS against introducing similarly-affected Muppets to an American audience, just….you know….reminding PBS that Congress could withhold funding.  And so it is that although Kami has made appearances in the United States (where her character is performed by Fran Brill), she has yet to incarnate in the American production of Sesame Street.  In fact, although there are versions of the program in over 140 countries, South Africa’s remains the only one to feature an HIV-positive character.

Kami’s been in the American awareness since 2002, people.  HIV/AIDS has been something we couldn’t ignore here since 1981.  How long will it take us to teach our children about this?  How long before they learn that it’s ok to have a friend with this special need, too?

 

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From the Archives

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Random Tip Tuesday: a surprisingly useful game for special needs kids

November 29, 2011 By 6 Comments

Ash spends some tune-things-out time during a family gathering, trying his hand at playing a free online Mah Jong solitaire game by himself.

People make a lot of fuss over online games being a waste of time.  I figure at least most of them aren’t a waste of time unless too much time is spent on them, or time is spent on them that wouldn’t better serve the player in some other kind of activity — perhaps one that would better meet the same need(s) — at that particular time.  After all, aside from the medium, how are online games so different from other kinds of games children play?  Oh, the specific pros and cons can be held against those of other kinds of game-playing, from different angles, sure.  At the same time, many of the same kinds of general arguments can be made for and against the playing of everything from board games to dress-up to tag to…  You know what?  Humans are the only animals that second-guess the value of play.

Anyway.  I’m not making a very thorough or organized argument, but then, I’m still recovering my spoons from the same family gathering Ash was given more allowance to tune out.

What I wanted to mention here was one specific game that Ash has occasionally taken up recently, and the benefits thereof.  The game is the particular free version of Mah Jong solitaire found HERE.  We keep the sound off on the computer when it is played, because otherwise you have to keep setting the annoying music and tile-clicking sound effects to be off each time you start a new game, but otherwise it’s a pretty reliable version, with a number of options when it comes to pre-set and editable layouts as well as tile set styles.  What are the skills developed by this particular game-play?  Ash must exercise fine motor control (with no tangibility to the causal results, either), the distinguishing of three-dimensionality represented in a two-dimensional image, the processing of visual distinctions within a distracting visual field, the ability to find matches among unfamiliar forms, the ability to identify likely sets of non-matching forms, and strategic planning.  Beyond this, care of the option of changing tile layout as well as style, Ash must apply the rules and adapt the methods learned during one game, to another that might appear to be extremely different, even if going by the same name.

That’s really not bad, for just one game, eh?

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You might be an Autism parent if…

November 23, 2011 By 11 Comments

Click to find the #youmightbeanautismparentif hastag on Twitter.

Although it has yet to ‘trend’, a phenomenal new hashtag on Twitter is #youmightbeanautismparentif — it’s prompting inspiration, amusement, understanding, increased community networking, and some great conversations.  I’ve been playing on it myself as FroggyPrinceMom, and there have been some requests to collect my contributions all in one place as a post.  I’ll do so here (assuming I catch them all when scrolling back through my own feed), and welcome friends to post links to the same from their blogs, in the comments!

 

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The following are other people’s blog posts on #youmightbeanautismparentif:

@AspieSide‘s POST at The Aspie Side of Life

@diaryofamom‘s POST at A Diary of a Mom

@CaffeineAutiMom‘s POST at Caffeinated Autism Mom

@BeckyH_253‘s POST at Painting With Picasso

@MumForAutism‘s POST at Aspie in the Family

@PoopingRedGuy‘s POST at Pooping Red Guy & Friends

@juliecoryell‘s POST at I am JuJu!

@thepyxie‘s POST at Aidan’s Autism Adventures

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Random Tip Tuesday: a feel-good Thanksgiving craft

November 15, 2011 By Leave a Comment

Sorry, this is the best image I could find already on this computer. This was (give or take a name change) Ash's thank-you card made for the end of the last school year. It was delivered, topping a brownie, to his GenEd teacher, SpecEd teacher, 4 class aids, Music, Art, Library and Gym teachers (because almost no one ever thinks to thank them), his ST, OT and PT, and his bus driver. If there hadn't already been so many of them, we might've included a couple of other people, but these were the people that interacted with Ash regularly, and that he brought up. Admittedly, I got him to make the card by faking him out and setting it up to look like a homework assignment, but that's only because writing is a lot more challenging for him than delivering thanks orally.

Ideally, our kids will learn to feel gratitude without having to be reminded to.  Ideally, one of the things our kids will be grateful for, is themselves.  Ideally, our kids will be aware that one of the things WE are grateful for is them, and THAT will be one of the things they are grateful for, too.

“Ideally” is a pretty loaded word, huh?

Luckily, not all the steps we can take to that utopia of sensitive self-confidence are as wobbly as our belief that we can ever get there.

Try this.  Seriously.

You might be surprised by how thankful this Thanksgiving ends up feeling!

Last year, some of the feathers Ash dictated said:

  • “I am thankful for — we are safe in our house when the sky is storming.“
  • “I am thankful for — chocolate pudding.“
  • “I am thankful for — hugs and kisses.“
  • “I am thankful for — my family.“
  • “I am thankful for — my Mommy and Daddy loves me.“
  • “I am thankful for — my teachers and friends at school.“
  • “I am thankful for — being a smart reader.“
  • “I am thankful for — Auntie L- gave me a book.“
  • “I am thankful for — Uncle A- plays music with me.“
  • “I am thankful for — bedtime snuggles.“
  • “I am thankful for — I love you forever and ever no matter what.“
  • “I am thankful for — Mommy is silly.“
  • “I am thankful for — Daddy got me more Wheat Thins.“
  • “I am thankful for — the sun was shining.  I think the sky was happy.“
  • “I am thankful for — kitties are soft.“
  • “I am thankful for — I got a gold star at school.“
  • “I am thankful for — the noise turned off.“
  • “I am thankful for — I can go to the library.“
  • “I am thankful for — I did a good job.“
  • “I am thankful for — Mommy is nice.“
  • “I am thankful for — Grandpa has a watch with buttons.“
  • “I am thankful for — Daddy painted with me.“
  • “I am thankful for — that was funny.“
  • “I am thankful for — we went to the zoo.“
  • “I am thankful for — I make you smile.“
  • “I am thankful for — my favorite dragon shirt.“
  • “I am thankful for — you always come for me.“
  • “I am thankful for — we saw a nice dog at the park.“
  • “I am thankful for — I am your little prince.“
  • “I am thankful for — I can watch the movie before bedtime.“
  • “I am thankful for – the milk is full.“
  • “I am thankful for — I think you said, ‘You’re welcome.’ “
  • “I am thankful for — Mommy read with me.“
  • “I am thankful for — we looked for leaves on the way to the playground.“
  • “I am thankful for — there are lots of feathers.“

 

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Everything has its season: Autism, and autumnal opportunities

November 7, 2011 By 4 Comments

If you were to ask most children what they don’t look forward to about the fall, they’d tell you that school starts in the fall.  Ash, on the other hand?  Ash, who wakes each morning during vacations with a hopeful, “School is open?”  Well, assuming he was able to process the question and how to formulate the answer, he’d tell you that in the fall, the sun starts getting too tired to shine in the sky.  For my sweet, sunlight-tuned boy, whose default mood is HAPPY, autumn brings an automatic damper on his exuberant spirit.  That doesn’t mean his infectious giggles quiet down without a fight.  Oh no.  Not my kiddo.  Psshhhh…not a chance.

No no no, for all that he knows the very sky is adding to his challenges each time this season comes around, Ash is far more likely to focus on the aspects of the season which broaden his smile.  There is school, of course — once so hard to fathom, and now so tricky to go without.  There are obvious delights like Halloween, which Ash will be hard-pressed to let you forget about, just in case they weren’t obvious to you, too.  There are less distinctly marked seasonal activities as well; such things have been growing on Ash over the years enough that they have started becoming pleasant traditions.  In the autumn, these things….a shock, I know….revolve around the falling leaves.

There are a lot of things you can do with leaves, even before getting into the realms of craftiness.  You can go on leaf hunts.  Ash and I would do this on the way to the library — the challenge was to not only find one leaf of each color, but eventually to also have each color leaf be a different shape.  Ash was always rather annoyed that we could find leaves in red, orange, yellow, green and purple, but….what the heck, Nature?!….not in blue.

This was taken in November of '08. He was actually reciting the poem around the photo border at the time, having memorized it from the Baby Einstein "Baby Shakespeare" video.

Sometimes, on the way home from the library -- if we'd already found our almost-full rainbow of leaves -- we'd switch to an exercise in decision-making. Ash would try to find me the prettiest leaf of all.

Ash proudly holds an oak leaf he found me, in mid-October of ’11. We have worked our way up to learning some tree types by leaf shape.

Then, of course, there is the practice — nearly instinctive for most children — of walking through the fallen leaves.  Crunch!  Crunch!  Crunch!  Crackle!  Crinkle!  Crunch!   Sometimes you stomp, sometimes you shuffle through, sometimes you kick them into the air as you walk.  For a sensory kid, the activity might be enticing, or might be torture.  (I recommend taller boots and tucked-in pant-legs for the activity, to limit the amount of arboreal shrapnel to poke legs, ankles and feet.)  With a little preparation and a lack of wind, you can create a maze of leaf-paths, or stepping-stone style miniature leaf piles to jump between.

"Mommy, y'wanna walk in da owange weeves." - Ash, November '08

Another great fall activity — best introduced before society, or our own grumbling, teaches our children that it’s supposed to be dreaded — is raking.  Admittedly, a child with the actual age or development of a little one, wielding a rake, is probably not going to be nearly as helpful as the child will get to feel.  That is, of course, entirely not the point.  It’s a great little (dare I say tiring) activity for exercising strength and coordination.

In mid-July of 2010, Ash took an interest in raking for the first time. We got him his own miniature rake that fall, which naturally he handed to Steffan or I in favor of trying to take back the giant, awkward one.

This year, we got Ash to "help" us rake up a leaf pile for him to try jumping in. It was very sunny, so he wore what was suddenly called his "leaf-raking hat". (Previously seen here -- http://unhandicapping.com/this-that-and-the-other-thing-and-some-dragons/pickshisownoutfit/ -- the hat had been a spontaneous gift from one of Ash's "church friends" last year, when it's owner decided it would look cuter on Ash.)

Ash looks SO MUCH like his daddy in that last picture, it makes me want to raid my MIL’s stash of old photos and hunt for a near-identical photo of Steffan that surely must exist.  It also reminds me of an amusing moment that I forgot to include in the Halloween post.  One classmate turned to Steffan and said, “Are you Ash’s Daddy?”  Another classmate turned to them and said, “Of COURSE he is!  Can’t you TELL?  HE LOOKS JUST LIKE HIM!!!”  Yep, even the six year olds pick up on that one.  Anyway…

The best part about raking is that it creates leaf piles!  If your kiddo enjoys tromping through leaves, and can tolerate using their hands to shove leaves into those plastic leaf bags that look conveniently like jack-o-lanterns, then the logical next step is to play in leaf piles.

What?  This is MY world, and that’s how logic works here.

Best made somewhere like your yard (where chances are better that you control the amount of broken-bottle-glass and God-knows-what-else mixed in with the mulch), leaf piles are fabulous for turning into forts for Nerf battles, jumping into, building at the bottom of a hill for rolling into, and if you’re feeling brave, even for tossing at each other.  Best followed by a tic-check and a bath, it’s silly, sensory fun that also has a way of being pretty photogenic.

The first time Ash went all-out with his leaf playing, and jumped in a pile -- 10/31/09

The next time after that, that Ash worked himself up to not just TALKING about jumping in a leaf pile -- 11/6/11

Gee, what could he be up to?

*cough* Never saw THAT coming. *cough*

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Autism, insights, and changing opinions

August 25, 2011 By 3 Comments

I have a confession to make.

I love how many voices of Autism are getting out there, aside from Autism Speaks.  I love that it’s not just parents of autistic children any more, but also autists — both children and adults — themselves.  I love that, slowly, this is teaching more people to step outside of their own experience and really consider the different things that autism has, does, will, and can mean to people living with it.

There is, however, something tangential to this which really gets on my nerves.

I see it all the time.  Someone posts a link to a blog post or article written, either directly by an autist or otherwise showcasing their perspective.  Occasionally, this even happens with something posted from the perspective of the caretaker.  It goes viral — or at least what passes for viral within the special needs communities.  People are touched by these insights into how the person thinks, what they feel, their wishes for how it’s all dealt with.  And then, it happens.  A whole lot of people whip themselves up into a frenzy, desperate to prove their empathy, their compassion, their education, etc., by immediately changing what they think, how they feel, and how they go about dealing with and advising others to tackle….all of it….in a blanket sort of way.

It’s like there is this ironic reflex to respond to someone’s ability to speak for themselves, by subconsciously giving them beyond their due consideration when it comes to speaking for “everyone else” that “they represent”.

Guess what?  They represent THEMSELVES.  However many others do or don’t feel as they do about any given element of things, for the same or different reasons….they are still one person, and the whole bloody POINT of Autism being a SPECTRUM disorder is that ONE PERSON IS NOT EVERYONE.  You know, just like in the world of those who don’t have Autism.  Shocking, really, I know.

Yes, please, take what they have to say into consideration, especially when it comes to those who cannot speak for themselves.  Consider that it is the reality of one, no doubt the reality of many more, and it might be the reality of others.  Have conversations, watch videos, read books, read blogs, go to cons….collect awareness.  But do not confuse broadening perspective, even refining perspective, with replacing perspective over and over again.  If you already know someone who feels very strongly that they, “Have Autism,” as opposed to, “Being autistic,” then do not start referring to them as being autistic just because you’ve read a more recent, or to your mind better-written post BY SOMEONE ELSE, which explains their rather opposite rationale and sentiments.  Or, if one parent say, “I really wish people would do this,” but another parent says, “Good grief, why can’t people just do that,” well, sure, it complicates figuring out what to do, but you might just have to consider that one or the other — or yet another course of action — might be the best way to help, or at least not hurt them.  One experience does not invalidate another.  Such experiences can include the exact form of autism someone has, combined with the exact form of anything else they have, combined with their personality and more purely physical health, combined with their life circumstances.  Such experiences can include the things that happen to them during their life.  Such experiences can also include what they think and how they feel about any of it.  This issue comes up a lot, especially between –sadly — what might be thought of as the “high functioning” and “low functioning” camps (of course, some don’t like those distinctions at all).  I think people need to make a conscious effort to take their awareness of these contradictions to the next level, though….and REALLY keep in mind that Autism, just like anything else, does not make one person’s truth, that of another.

No matter how you, anyone else, or they classify themselves.

Filed Under: Blog, Journalism Tagged With: , , , ,

I didn’t want to say it: when professional denial leads to personal setbacks (part 3)

July 30, 2011 By 1 Comment

Image found using Google Advanced Image Search as being free for commercial use. Click to see image source.

This is a follow-up to feature Part 1 and Part 2, which between the two of them describe three of the four personally-experienced kinds of situations in which a medical professional might withhold diagnosis, even if they are aware of what an appropriate diagnosis might be.

The fourth, “I didn’t want to say it,” or, “I didn’t want to call it that” scenario can most easily be explained as the “Don’t Blame The Messenger” complex.  Sometimes medical professionals decide not to tell the patient or patient’s caretakers what they believe the diagnosis is, at a given point in time, because they don’t want to be the one to do it.  To give them the benefit of the doubt, other elements might be the belief that knowing the diagnosis would not benefit the patient at that time, or that at least there would be no danger in postponing awareness until some less sympathetically-squeamish professional lays it all out on the line.

Sometimes, we found, this instinct is so strong that medical professionals will reflexively resist using the name of a diagnosis with you, even if you came to them already using the term yourself.  This situation arose for us, much to our slightly frustrated amusement, rather recently.  It was time for our son, then five and two years past his closing evaluation from Early Intervention, to have his formal evaluation — updated for his age and current laws of his state-of-residence — from the school system.  We came to them already saying that he has, among other things, Autism Spectrum Disorder; it was part of the medical background / profile that they put together from us, for him, before doing their evaluation.  And yet, when the evaluation was complete, it was as if they could not adapt to learned, involved, accepting parents after only dealing with  (one had to wonder) ignorant, prejudiced, blame-the-messenger types, and they were afraid to agree with us!  For a good hour or so, assorted therapists, the psychologist, the case manager and the school system representative who were all involved in the evaluation — via a local special education center — all tiptoed around the term.  It was almost like a bad sitcom where the father inevitably faces his purple-faced, frothing-at-the-mouth youngish daughter and tries his hardest to never have to say the word “period.” When one of them finally, visibly braced herself and then blurted “Autism” out, she framed it with, “I know Autism is a scary word…” Right.  Ok.  Sure.  But since we’ve been standing here using the word with you, since we came here with preemptively voiced intentions of doing so, I’m pretty sure we might as well just move on, because we’re harder than that to scare, by now.  We wanted you to agree with us about it, because we need you to support our efforts at getting him the state/insurance-based evaluation for a formal, government-recognized Dx, because we know that’s what he needs to be able to get the most and the best of the kinds of help available.  So, why don’t we settle on using the words we all know for what my son’s issues are, so we can talk about how we’re doing to go about doing things for them, eh?  …Such were OUR reflexive thoughts.

When you consider that kind of trained resistance to even welcomed and initiated directness, it is all the easier to imagine that decisions might be made for you about whether or not you are ‘spared’ potentially useful information that you do NOT already know.  The solution to this one — or the closest to it that there is — is, once again, to self-educate, and to self-advocate.  If someone is in a position of power to make use of pertinent medical information in life-changing ways, then do not allow them to leave you out of the proverbial loop, no matter how uncomfortable that loop might be, because you need to be involved. If there is no obvious whispering behind hands that you’re being told you are imagining, don’t assume that means there is none.  “Is there anything else I should know?” is a very important question.

 

 

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Filed Under: Journalism

I didn’t want to say it: when professional denial leads to personal setbacks (part 2)

July 30, 2011 By 1 Comment

Sometimes a medical professional will neglect to give you the name of an applicable diagnosis because they fear you can't handle it, and other times they might feel professionally obligated to withhold it!

This is a follow-up to Part 1 of the same feature, in which I discussed two of the reasons why a patient might face unanticipated challenges to having their medical needs met, because of trends in the withholding of diagnosis.  In some situations, a doctor might essentially lie to the medical insurance companies in the form of not acknowledging a diagnosis which is applicable, so that a patient will, they think, have an easier time getting medical coverage and care — a reality which could problematically change down the line, leaving the patient without the foundation they need for appropriate treatment.  Another doctor might hinder the coverage of helpful treatment because they are afraid to be seen as lying to the medical insurance companies, by offering a diagnosis which is, in a sense, an incomplete truth.  Here, I will discuss two other personally-experienced situations in which medical professionals might fall into potentially counter-productive patterns of, “I didn’t want to say it,” or, “I didn’t want to call it that.”

Most professions have built-in rules, some traditional etiquette and many legal.  Most people outside of those professions never become aware of what many of those rules are, which can lead to often misdirected frustration — sometimes from both sides — among greater hazards.  One rather key example of this is that the evaluators and therapists offered through the federal program of Early Intervention are not technically qualified to diagnose anything, and so they are not allowed to bring up the names of any diagnoses which are not already put into the paperwork when E.I. services are requested.  How did I find this out?

Because our son was born two months prematurely and with a blood disorder, his physical health was under professional scrutiny from the beginning.  Most preemies are expected to “catch up” by age two, but all the same, when he showed significant developmental delays at one year old, his primary care physician supported our interest in requesting Early Intervention Services.  The particulars of his medical history made it logical to assume that the issues of his early physical health had resulted in a need for attention to his neurological health.  And so, E.I. was called in, did their initial evaluation, and readily agreed that our son needed speech therapy and developmental therapy.  Months passed, however, without any significant improvement in, or even much in the way of addressing of, the “core concerns” we had hoped their therapeutic services would tackle.  There was obviously a missing link somewhere, but whenever I looked for it during a therapy session, my view was blocked by (suspiciously bureaucratic) walls.  Finally, during my constant private research, I hit upon an answer so glaringly perfect that it was disheartening to think that it had defied the medical professionals assigned to my son’s case.  The daughter of some friends of ours had just been diagnosed with Sensory Processing Disorder, and what they said about it rang a number of bells — once I looked further into it on my own, it was a perfect symphony.

Triumphant….and, ok, a touch defiant….I called up our son’s case manager, and told her that I was fairly certain he had this particular disorder, and since it had been missed by the array of therapists brought in to do his initial evaluation for them, they needed to bring in a specialist trained specifically in SPD, to evaluate him in terms of that condition and arrange more targeted therapy.  As was the way of things, I had to deliver this message via voicemail, but by the time of our son’s next therapy session she must have gotten it, because word had reached his Speech Therapist.  ”So,” she said, “I hear you figured out that he has SPD.  I’m so glad.”  ”Yes,” I replied,  ”Once you know what to look up, it becomes extremely obvious that that’s a vital angle to approach this fro……wait.  You KNEW he had SPD, didn’t you?!”  ”I strongly suspected it,” was the only-slightly-defensive response.  ”So why not bring that up?!  Why waste months of precious and limited time — not to mention the money the government’s limited funding is spending on it — on therapies not accurately-targeted enough to make the difference that was needed, if you had a good idea as to what might actually help?!?!  WHY,” I said to this woman who had muttered and gossiped many a thing off the record to me, “did you not SAY ANYTHING?!?” With a shrug of disgruntled apology came the enlightening answer.  “Because,” she admitted, “We aren’t allowed to.”

Keep this in mind, parents, for it is one more reason why it is dangerous to rely entirely upon only what the ‘professionals’ tell you. Even if you think they’ve given you all the answers, do your own research and think about what they’ve told you.  If there’s something that seems worth talking about that they haven’t brought up, bring it up yourself.  Although it might seem counterproductive to their professional aims, or even just plain illogical, sometimes they simply CAN’T be the ones to bring it up.  If there’s an obvious missing link and you feel like you’re running out of time to find it on your own, find an appropriate time to ask if, off the record, there is anything they feel you should look into, that they legally cannot formally bring up themselves.

Please refer to PART 3 for the fourth example of a situation in which, “I didn’t want to say it,” or, “I didn’t want to call it that” might arise, and in which professional denial could lead to personal setbacks.

 

Filed Under: Journalism
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