The Days Blur, The Day's Blur, The Daze Blur

You can relax later.  We've got a schedule to keep!

Another busy day.  


Leslie and I took Lily to her special magic autism doctor.  Her appointment was at 5:00.  If we finished quickly we could still drive across town and catch the start of Emma's softball game at 6:00, or possibly catch some of it at least.


I left work early to meet them at the doctor's office.  When I got there, Leslie had Lily in the back getting weighed and measured.


"How much did she weigh" I asked after greeting them both with kisses.


"34 lbs," Leslie replied.    


I shook my head.  "That's lighter than last time, isn't it?  What'd she weigh last time?"


Leslie shook her head tiredly.  "I think it's lighter," she said, "but I didn't ask about last time."  


We crossed the room and took seats in the waiting area.  Leslie told the nurse we needed to be somewhere at 6:00 if they could get us in sooner rather than later.  The doctor is busy though, and the people before us got there late.  It was 5:15 already.


Lily was being so good.  She sat at the little table in her little chair and leafed through little books.  She finished with one before moving on to the next rapid-fire, flipping the pages to the end before flinging the book aside for a new one.  


"Lily, pick up the book and put it away, baby," I said.  She walked to the book and picked it up from the floor, plopping it on top of the bookcase in the doctor's waiting area.  Good enough, I thought.  She picked up a new book and started looking at it.  Standing and looking at books is bad business.  When she stands to look at them, they end up ripped, so we told her to sit, and she did.


I looked at the clock.  It was 5:30.  I walked over to the sign in sheet to see when the people before us got in for their appointment.  In the leftmost column is a name, in the middle column is their arrival time:  4:20, in the rightmost column is their appointment time:  3:30; 50 minutes late.  So, because these assholes can't get to their appointment on time, we're going to pay the price, apparently.


"I'm going to tell her if we can't get in in the next 15 minutes, we'll have to reschedule.  Does that sound fair?"


Leslie agreed and I wandered over to the receptionist to let her know.  She told me she'd inform the doctor.


10 minutes later our appointment started.  


He's a fast talker with all the numbers in his head and he referenced half a dozen studies and three "international" conferences he attended in the past six months since we last saw him.  He started asking questions.  I got the distinct impression, as I did the last time, that Lily is jumbled together with other kids being seen at this busy practice.  He asked things like, "is she on any supplements yet?"  In fact, she is.  She was six months ago when he saw her too.  And six months prior to that.  


He added things to her supplemental diet again.  I spoke up, "She's not a spectacular supplement taker.  Is there any way to combine some of these things in a single pill or liquid?"  He consulted his notes and added something else instead.  Four new supplements to bolster the four she's already taking.  Outstanding.  


"It's the consensus of autism treatment doctors," he told us.  


"We'll give it a try," I reassured, after explaining that our big concerns with new supplements are her sleep and appetite.


He asked another question that made me wonder if he had any idea who Lily even was, "Is she still eating well?"


I look confusedly at Leslie.  "Still eating well?  She's never eaten well." 


He attempted to clarify, " when you first started seeing me she was eating well."


"When we had the old TSS she could get her to eat pretty well," Leslie offers by way of rescue, "but she cycles in and out of foods, so sometimes she likes things and sometimes she doesn't."


I've gotten impatient with the question though, probably because regardless of why he's asking it, it makes it seem as if he isn't really paying attention, "No.  If the baseline of her eating is when we started seeing you then no.  Her eating has gotten steadily worse since we changed wrap services.  Yes, her food preferences cycle.  She'll go months eating a preferred food and then she'll hate that food for months and not allow it past her lips.  But regardless of what her preferred foods are, she is not eating well."


Then he said the one thing guaranteed to set my wife off.  It's a testimony to how overwhelmed she is that she didn't jump over his laptop and start bludgeoning him with his office chair.  "You need to get more volume of food in her," He said.  She just looked at me.


No shit.  No fucking shit, doctor.  He saw the skeptical look on my face.  "You think I'm crazy -," he began.


"No," I interrupted, "I don't think you're crazy.  We completely agree.  And if we COULD be getting more volume of food in her, believe me, we would.  We keep feeding her until she resists, and then we continue past that.  It's not like we cut her off when she reaches some limit.  We want her to eat.  But we'll sure try."


"Does she feed herself?" 


"No.  Not really.  Finger food."


"I really encourage you to get her feeding herself."


Again, my skeptical look startles him out of whatever theoretical playbook he's reading.  "We're back to the age-old question, Doctor, which is more important:  teaching her to feed herself, or getting food in her?  You have her weight from the last visit?"  He nodded at this, looking at his laptop screen and I continued, " She weighs 34 pounds now.  I'm almost positive that's less than what she weighed six months ago."


Leslie added, "When she feeds herself she's even less likely to eat well."


He made a point that kids often fight being fed because it's a control issue.  We understood.  "But," Leslie offered, "she can't really hold the spoon or fork properly to get the food in her mouth."


Lily cheerfully continued perusing the books in the doctor's examination room, moving from one to another to another until she started the process over again with the first.  She periodically glanced up to say, "Hi doctor," and giggle shyly before returning to her page turning.


The clock ticked by and we exchanged questions and answers, suggestions and prescriptions.  It was 6:30.  Emma's game had started.  It was a thirty minute drive, but we might still catch the last inning or two if the appointment ended soon.


But it didn't.  At 7:00 we left.  We had a prescription for a baseline EKG (EEG?  I always confuse the two), A referral to a nutritionist, a referral to a vision therapist, a recommendation to visit an allergist, a plea to visit the audiologist (for baseline hearing test for her file), four supplements and a push to get her to feed herself.  More appointments, more stress.


In the meantime the game was over, Emma's team lost.  We missed it.


Tomorrow at 3:00 we have an appointment with a pediatric psychiatrist to look at possible medications to control impulsivity.  When we brought this up with our autism doctor, he seemed put out that we weren't using him to do that, but I can't worry about his feelings.  


At 6:00 we need to get Emma to the school for her Orchestra recital.  


Friday is Emma's dance recital at 7:00, she'll need to be there by 6:00.


Saturday?  I'm not really sure. . . I can only keep track of about two days at a time anymore.

Walk Day!

I got all excited because during the walk I took a poop-load of pictures and tagged them geographically.  In my head I was thinking, "I can get a map and just plunk the pictures in and make it all interractive and gadgety, and by the time i was done exporting map routes to Google Earth and then Google Maps, and then Panoramia and uploading pictures and on and on, I finally decided that IF a blog post about this walk was to be written. . . perhaps I'd best dumb it down because it was taking forever and I still wasn't happy with what I had.


So. . .


I wasn't really worried that Lily wouldn't like the tshirt, but even if I HAD been worried, I needn't have.  She jabbered about how she liked her blue shirt and seemed genuinely fascinated by her picture on it.  It was pretty cute.  I really wasn't sure if the cartoon would be too abstract for her to link to herself.  I was worried that I hadn't sketched it well enough regardless.  I mean, it was really a two pronged problem.  1)  Did I do a decent enough job to even make the sketch recognizable to someone who didn't know who it was supposed to be, and 2)  Would Lily be able to put it together.


Emma and I left early to get the registrations stuff done so Leslie and Lily and my parents could just show up and walk, but Leslie sent these pictures.  Lily's l's are w's, so really she was saying, "It's wiwee!  It's me!" but who writes that way?  Regardless, it was VERY cute.  Leslie said she was very excited to walk (see exhibit B).


Couldn't have asked for a better day.  It was crystal clear.  No clouds, mid 70's all day (when it wasn't mid 80's).  We got there about 7:40 and introduced ourselves to ABOARD (Autism Connection of PA).  They were really helpful getting us tshirts and water bottles (or. . . water skins.  They were like foil versions of a wine skin, kinda cool) and giving us tickets to fill out to enter for drawings to win stuff in the overall Highmark Drawing.  They'd forewarned me to bring address labels, and I printed some out, but not enough. We got 1 entry for every $50 raised. . . and $2500 raised. . . so there were 50 tickets for the big drawings, but I'd only printed out 30 labels.


While I filled out the rest of the labels, Emma stood guard and held the completed ones so the "wind" (it wasn completely still, but she needed a job or she was going to drive me batshit crazy pacing around me) wouldn't blow them away.  A band started warming up behind us at Stage AE.


Emma said, "Is that such a good idea?"


"What, Em?"


"A band?  Don't some autistic people have problems with really loud noises?"


"Yeah," I told her, "But this isn't just a walk to benefit autism charities, there are all sorts of charities here."


"Okay. . ." she said, unconvinced, eying the stage suspiciously.  I liked that she's thought about that.  


A clown wandered over to the table where I was filling in addresses and Emma reoriented herself so that I was between her and the clown.  It was funny.  The clown made small talk. . . sorta. . . it was schtick.  She had blue hair, and I'm not going to lie. . . she was creepy. . . but she was funny, as clowns go.  


She started setting up for balloon animals while I continued to fill out information.  As I listened to her banter with people queuing for animals I muttered, "She's pretty funny, right Em?"


Emma, still behind me, said, "I guess. . . for a clown.  I don't really get 'clown humor'.  I get your humor."  I laughed and we finished the last couple tickets and looked for a place to turn them in.  I asked Emma if she wanted her picture taken with the clown but she said no. 


People started showing up for the race and after I'd turned in our tickets Emma made herself busy with her friends.  I stowed the rest of our stuff at the Aboard tent and meandered around, making small talk with people and cluelessly attempting to seem organized.  Lily and Leslie and my parents arrived and I had an excuse to seem disorganized as I'd take turns watching Lily in the crowd.  It DID freak her out a little.  BUT. . . her biggest issue was being wrangled into position (for pictures, or when we tried to keep her from walking off and exploring), not from the noise or crowd.  

The Pirate Pierogies were there and Lily loves her characters.  I got a picture of her with. . . Cheese Chester.  If you're not from Pittsburgh this will make ZERO sense to you, and it's too long to explain in what's probably already going to be a pretty long post, so link >>HERE<< to see what the hell a Pirate Pierogie is.  The event was FILTHY with pierogies.  And Steely McBeam (Pittsburgh's shameful secret Steeler mascot that nobody outside Pittsburgh knows about and nobody inside Pittsburgh acknowledges) was there too.


Tell me that pierogie isn't creepy.  You can't, can you?  No.  But not as creepy as a clown, so I guess, whatever.  So Lily kept trying to latch on to whichever costumed polish food product was closest and we got a couple pictures.  I took one of Emma and her friends with Steely, but it must be on the camera and not my phone.  He's probably even creepier than the pierogies are.


And then things got weird. . . Lily started a doomed and heart-breakingly brief romance with the cartoon image of herself on Emma's shirt:

"Hey baby.  How YOU doin'"

"I kissing her"

This was 'happy time'.  Because sometime AFTER this is when I kept forcing Lily to stay near the Aboard table rather than meandering into the crowd of 10,000 (!) saying, "I want balloon" since the place was riddled with balloons.  And she got pissed and had a mini melt down and tossed her kicky spectacles on the ground and my dad, who was walking behind me, almost smashed them underfoot, but saved them.


We started collecting at the starting line around ten to 9.  The walk was supposed to start at 9, but it was a little late.  Leslie and my parents took Lily aside after a painful picture attempt and they lined up behind us because there was a 5K walk (for serious charity walkers) and a 3K "Fun" walk.  Because those people aren't serious about walking.  It's all for fun.  We. . . everyone but my dad, my wife and Lily, were walking 5K.  For the children.  


The turnout:  Within the 10,000 walkers our subset consisted of about 42 walkers.  It was magnificent.  Everywhere you looked was a little cartoon of Lily on a shirt.  So many of Emma's friends from school made it.  Emma's dance teacher had to call off dance for Saturday because six of her dancers were at the walk.  Friends from primary school and softball and dance were there to support Emma supporting Lily.  It was beautiful.


We were starting at the bottom blue dot, and we were finishing at the top blue dot.  They mumbled some instructions into a megaphone before the start of the walk, but I wasn't paying attention, and it's not like there was any danger of losing my way in a crowd of 10,000 people all going the same route (although I suppose if they'd all have toppled off the Rachel Carson Bridge I'd have just pointed to Emma and the rest of our team and said, "It's THIS way, I think" and we'd all have died.)


The starting line was crowded with people.  Our group was probably a thousand people back or more.  We heard the sharp report of the starter's gun and as a cheer went up from the crowd, I ditched the balloon that Lily had wanted to have but didn't want to hold in celebration and we slowly plodded forward as the mob began the slow surge into motion and the space around us started to dilate.  After a minute or so we were actually walking, and I used my phone's dusty "Mapmyrun" feature to record our progress.  We were moving at about a thigh-cramping .7 miles per hour at least for a few minutes before we were able to stretch our legs and walk reasonably.

About three minutes into the walk a TV camera materialized and Emma was on it like blue bonnet.  If she made the news we never found out because we couldn't tell what station carried it (the camera wasn't marked and our preferred local news didn't show her) and moments later then he was behind us and our feet were carrying us toward PNC Park (where the Pirates play).


We walked past Honus Wagner's statue and I snapped a picture.  Actually, I snapped three.  The sun was shining so bright in my eyes that I couldn't see ANYthing on the iphone to tell if I was getting a picture of the statue or not.  All three pictures ended up sucking to various degrees, but this was the best of them:

You can see the rays of light beaming into my eyeballs here. . . 

and. . . this was the worst of them:

Arrrgh, my eyes!!!  Pathetic.

The kids were doing great.  In fact, they did really well until about a half mile from the finish line.  Even then they didn't completely wilt and stayed relatively upbeat.

Emma's in the front on the far right with her sweatshirt tied around her waist.

Meanwhile, behind us, Lily and my dad and Leslie had started their walk 15 minutes later.  Leslie told me Lily was doing great and that she'd actually gone to the bathroom in one of the (urk) port-a-johns before the start.  That was great news for us, and her in particular.  She sent me a starting picture:

Note glasses dangling from Papa's collar.  Still. . . she's chipper.  

Ahead, we walked through night and day past the Andy Warhol museum, and in and out of weeks through tunnels and almost over a year over bridges to where downtown Pittsburgh was.

"Tee dum, tee dee
A teedle ee do tee day
We're out for fun
And this is the game we play:"

 

You didn't realize when you signed up to be a virtual walker that you were actually going to have to live this walk picture by picture, did you?  Or perhaps that was your secret hope.  One of our friends who couldn't make it, sent text messages to Leslie showing her kids wearing signs supporting the walk while they walked somewhere else.


Only a few more to go.  We walked into the city along Fort Duquesne Boulevard past this mural:

And Emma spotted her summer CLO (Civic Light Opera Academy . . . for theater and music-y stuff) in this spooky alley.  The CLO offices are significantly less spooky than this alley, I assure you:

You can almost see the sign. . . it's approximately "beyond the point of no return" feet down the alley.

We made a wide turn and made to head back on 10th Street.  I texted my wife that we just passed CLO Academy and she replied, "we're done."  So that was good.  But we still hadn't made it to the second mile.


Emma yelled frantically that she needed her iTouch to take a picture of PNC Park and I fumbled for it before finally extricating it from my pocket where I was keeping it safe.  She had the disappointed look of someone who'd just missed a great opportunity, but I said, "Just run over here with me, stop, and take the picture.  We can catch back up." And she brightened immediately and we jogged to the fence line and took a picture across the river at the ballpark:

It was hot by that time, probably in the 80's.  The girls weren't quite as spunky, staying close to their parent or chaperone and not giggling quite as much, but really nobody was whiny or upset.

We'll cross that bridge when we. . . oh. . . now.

We crossed back over the bridge and were in the home stretch.  I texted Leslie to ask where they were.  They were at the ABOARD tent.  We marshaled our remaining resources and soldiered to the end.  Emma later lied and told me she wasn't tired at all.  

The youngest team member

People had started peeling away from the group, heading toward cars, trying to get home quickly before the rush.  I hollered my thanks to their departing backs and their shouted, "your welcome!"s.  We had a softball practice game scheduled for a few hours later, and I knew people were trying to get their kids home and cooled off before it started.

still keeping it together

made it!

And then it was over.  I found my family and met some more ABOARD people.  They'd graciously stored some of our extra shirts and water in a box behind their tent.  Before I left they did shake me down for their photographer's camera.  Apparently he'd put it in the box with our stuff for a while.  I assured them I didn't have it, but if I did I promised I would give it back.


As we left with a box full of ABOARD tshirts, we stumbled across some team members and handed some of the shirts and water 'bottles' out, lightening the box a bit for the walk back.  


Lily was still relatively happy.  We dangled a promise of McDonald's over her head and she latched onto it like a promise of salvation.  We stopped at another port-a-john before we left, the walk had taken about an hour and a half by the time we were ready to leave, and we didn't trust the 20 minute trip back to McDonald's to proceed dryly. . . but it she didn't go, and she still stayed dry until we made it home where she used a REAL bathroom.  I didn't blame her.  I'd skipped my second cup of coffee just to stay away from those things.


Emma got a brief rest before she changed into a softball uniform and got ready to play.  I carted the extra tshirts and water bottles into the house to. . . do. . . something with.  I don't know.  I have to find the people that didn't get shirts and get them shirts.  


We raised about $2,500 for ABOARD.  When we started I thought we'd be lucky to get $500.  They thanked us for how 'organized' we were as a team.  I told him we didn't really have a choice.  When it started we thought maybe we'd have 10 or 15 walkers.  We walked with 42.  Organization by necessity.


Whenever I told the story about how over half of the donations came from people with whom I'd never shared a verbal conversation, amazed head shakes ensued.  And they're still "ensuing" at our house.  We're amazed at the generosity of our friends and family and. . . 'internet people".


Thank you all for contributing to an amazing and successful first walk.  I promise I'll be a little more 'together' next year if you're still around following our adventures.

Special Needs Ryan Gosling - Week 15

I am TOTALLY on top of Adventures in Extreme Parenting's "Special Needs Ryan Gosling" meme for TWO WEEKS IN A ROW!!  Plus, also, it was important to put some distance between yesterday's friggin' magnum opus and the blog in general.  I don't want to SCARE people.


To recap, since 99.7% of the participation is by "mom" bloggers, the interpretation generally seems to be "pretend as if Ryan Gosling is your significant other and or side project, and fill in the blanks, fantasizing about how supportive and awesome he'd be".  And also, I might add, there seems to be a pervy special needs mom-blogger element (also approximately 99.7%) that manipulates Mr. Gosling into . . . lewd situations.  *blushes demurely*


My take however, is that Mr. Gosling is ME.  We're practically the exact same guy anyway, except he wears WAY more flannel than I do.  Regardless, this would be me talking to MY significant other.  I AM the Ryan Gosling of Daddy Bloggers. . . you know. . . until someone prettier comes along. 


Today's Ryan looks so sad-face.  I guess when you look like Ryan looks, it doesn't matter HOW ridiculous your pictures are, when they're asking you to pose  you just say, "Curled up in a ball?  Sure."  Then you point at yourself and say, "Gosling. . . duh!"  And women swoon and start memes about you. 


Without further adieu, today's participation:

You know this is you.  Don't bother denying it.

Person With Sarcasm

Okay. . . fair warning.  This post turned into "War and Peace".  Except I never read "War and Peace". . . alright. . . um. . . it turned into "Gravity's Rainbow".  It's long.  My point is, it's really really long.  And it's probably preachier than I want to be, but I've given this topic a lot of thought, and since it's MY blog, I guess I can afford to be a little self-indulgent.  I'll proofread tomorrow. . . 


I started writing this post as a tongue-in-cheek transparently thin reference to my take on the whole "person first language" issue, but got sidetracked.  Some caveats and clarifications. . . it is not meant to trivialize autism(in fact that is the LAST thing I want to do), it IS, however, meant to trivialize the heated debate about person first language when referencing autism .  Also, I want to say that although the debate itself seems trivial to me, I do recognize the importance of using language that is inoffensive to the stakeholders being referenced.  So, although the entire debate seems ridiculous, I understand it's also necessary and even important to decide on terms and usage to avoid giving offense.  


I started writing my "take" and then took a break, realizing I would have to borrow heavily from other sources who have covered it with more thought, and sensitivity than I am able.  VERY smart people who are VERY good writers covered it ad nauseum from all angles.  But I was still left a little empty.  Maybe I'm the perfect person to cover this issue because my PERSONAL viewpoint is, in general, "I don't give a shit."  


That's not fair to me.  I DO give a shit.  But it doesn't personally offend me either way.  What I DO care about is being inoffensive to others, and to that end I will ernestly apologize for having given offense if I use terminology that is offensive to someone and adopt language that they find less offensive.  


What is Person First Language
First, to anyone who isn't heavily involved in reading blogs involving autism or disability (blog first terminology. . . it's appropriate because blogs CAN be separated from autism even if they are sometimes focused on it. . . see what I did there?  If you don't, read on, I'll explain) "person first language" is the idea that when you refer to an autistic person. . . you instead say "person with autism".  The main reason seems to be that by referring to the person rather than the disability, you are saying, "I see a person first and a disability or condition second.  I see a son or daughter or friend or cousin first."  I like the idea to some extent.  It makes sense to me.  It smacks of PC speech, which I think sucks ass in general, but the idea of PC speech, which is to attempt to be sensitive or at least inoffensive to others, is a good one.  So, quick and easy recap:  Person first = person with ______.  

Look at the CHEEKS!!!

How I refer to my daughter
I refer to Lily as "my daughter".  If I had adopted a child of a different race, say Asian, I would still refer to her as "my daughter", not my Asian daughter.  If she were gay, I'd still refer to her as "my daughter" not "my gay daughter".  I mention this only because to ME that is truly "person first" language.  


How I refer to my (spoiler alert) autistic daughter 
When I feel it's appropriate to reference her diagnosis, I refer to Lily as my "autistic daughter" rather than "my daughter with autism" almost entirely because, having read the points of view of the autistic self-advocates, that seems to be THEIR preference.  Let me use the example that might make more sense to someone not already familiar with this discussion:  If I wanted to refer to someone in the homosexual community without being offensive to homosexuals. . . I'd defer to what people in the homosexual community prefer.  THEY would be the people to whom I was trying to be sensitive, so their opinion would carry enormous weight.  I certainly would not IGNORE the voices of the homosexual community and use language they found offensive because it was MY preference(if the goal was indeed to be sensitive to that group when referencing them).  If I was speaking to someone who WAS offended by my use of 'autistic daughter' (this has never happened to me) I'm almost positive I wouldn't give a shit that I'd offended them.  


I'm not super happy about this, but even imagining a scenario where I, having given CONSIDERABLE thought to what language I should use to be least offensive to a group of people who share my daughter's diagnosis, had my balls busted about being insensitive pisses me off and I immediately imagine taking the offensive.  And I want to be clear that if YOU find something offensive, then, in the interest of being sensitive I should back down.  But I can't imagine a scenario where that happens unless I knew someone was very sensitive about person first language before engaging in conversation. . . in which case I'd try to avoid giving offense.


Okay. . . so essentially, I refer to Lily as "autistic person" rather than "person with autism" because 1)  It appears to be what people like Lily prefer and 2)  I don't otherwise give a shit.  


Someone is always offended
Rereading some of the above makes it look like I just waffle back and forth whichever way the wind blows, but that's not exactly true, and probably my family will read this and say. . . "Uh huh, like YOU try to avoid offending people. . . riiiiiight."  I didn't mean for it to come across as wishy-washy.  Let me say that I believe whenever you discuss or debate a topic about which people are passionate (abortion/religion/parenting/politics/etc) you CANNOT avoid offending SOMEONE with your opinion.  You just can't.  


I went to school to be an engineer.  When you manage engineering projects, good specifications give you a way to avoid conflict based on a list of diminishing priorities.  In other words, sometimes specifications contradict plans which contradict contract documents (like purchase orders) which contradict terms and conditions.  Good contract documents give you, as an engineer, a way of deciding which is most important.  


Here's an example: "In case of conflict in Order documentation, the following priority, in descending order, shall govern:


a.  Change orders to the order.  Later change orders shall have priority over earlier change orders
b.  The order exclusive of attachments
c.  Other documents, exclusive of Data/specification sheets, Detailed specification, Standards and Drawings, specifically referenced in the Order (such as notes of meetings) as forming part thereof.
d.  Data/Specification Sheets.
e.  Written Detailed Specifications.
f.  Project standards.
etc.


So as an engineer, if I'm looking at a company's standard for tanks and it says one thing, and the data sheet says another, I know I'm to follow the data sheet, because the priority list tells me what governs in a conflict.  


Okay, the link here to giving offense is that I feel like there's always going to be a conflict.  There's no universal language selection that will ever be inoffensive to ALL people.  So it's up to me to determine what my priorities are, in descending order of importance to resolve the conflict.  


My engineer's list, "In case of conflict in use of sensitive language related to autism, the following priority, in descending order, shall govern:"


1)  Lily (insert your own name if you are autistic or the name of your child here if he/she is autistic)
2)  People like Lily
3)  My opinion 
4)  People who love people like Lily
5)  People who know people like Lily
6)  People who have read newspaper articles about people like Lily
7)  People who watched "Rainman"


Lily doesn't currently HAVE an opinion on the subject, but if she did, I would want most of all to be supportive of HER wishes.  Barring that, I've deferred to the voices of those who share Lily's diagnosis.  You might notice that I value my opinion above yours if you're the parent of a child like Lily or love a child like Lily, but that's because I'm convinced I'm smarter than you.  At some point in the list of diminishing priorities, my "give a shit" diminishes proportionally.  It's probably somewhere around "5".  After about four, I refuse to waffle, I'm going to have to just let you be offended.


That's okay with me, because I know that I cannot realistically avoid offending SOMEone.  My goal in being sensitive to this issue is not to avoid offending anyone, but to avoid offending someone who matters; someone who I give a shit about.  I know too, that despite saying "people like Lily say autistic person not person with autism", some DON'T.  And so I'll probably offend them at some point too.  And that's ALSO okay.  It's okay because if I am making this much of an effort to avoid being offensive then my heart is in the right place, and if the person I've given offense to can see that too, then perhaps my offense can be forgiven and rendered UNoffensive.


Against Person First - This could go on for a while. . . 
This section would either be heavily linked (and you wouldn't follow the links.  I know you people, you're super lazy) or heavily quoted.  I will try to link to the post or document in question so you can read the discussions yourself, or verify the quotes, or whatever.  


First I'm going to list some talking points, and I'll follow it up with my questions or concerns.  Please understand that without actually reading the whole article by each person you're only getting my cut and pasted "soundbites".  You may be missing some of the context of the overall discussion this way, but I can't just quote all the articles entirely, so this will have to do.


From The Thinking Person's Guide to Autism:  "Person-first Language:  Why it Matters (The Significance of Semantics)" by Lydia Brown


1)  "It is impossible to affirm the value and worth of an Autistic person without recognizing his or her identity as an Autistic person. Referring to me as "a person with autism," or "an individual with ASD" demeans who I am because it denies who I am."

2)  "When we say "person with autism," we say that it is unfortunate and an accident that a person is Autistic. We affirm that the person has value and worth, and that autism is entirely separate from what gives him or her value and worth. In fact, we are saying that autism is detrimental to value and worth as a person, which is why we separate the condition with the word "with" or "has." Ultimately, what we are saying when we say "person with autism" is that the person would be better off if not Autistic, and that it would have been better if he or she had been born typical. We suppress the individual's identity as an Autistic person because we are saying that autism is something inherently bad like a disease."



3)  "Yet, when we say "Autistic person," we recognize, affirm, and validate an individual's identity as an Autistic person. We recognize the value and worth of that individual as an Autistic person -- that being Autistic is not a condition absolutely irreconcilable with regarding people as inherently valuable and worth something. We affirm the individual's potential to grow and mature, to overcome challenges and disability, and to live a meaningful life as an Autistic. Ultimately, we are accepting that the individual is different from non-Autistic people -- and that that's not a tragedy, and we are showing that we are not afraid or ashamed to recognize that difference."


From "Why I Dislike "Person First" Language" by Jim Sinclair, founder of Autism Network International (ANI)



"1) Saying "person with autism" suggests that the autism can be separated from the person. "



"2) Saying "person with autism" suggests that even if autism is part of the person, it isn't a very important part.  Characteristics that are recognized as central to a person's identity are appropriately stated as adjectives, and may even be used as nouns to describe people: We talk about "male" and "female" people, and even about "men" and "women" and "boys" and "girls," not about "people with maleness" and "people with femaleness."  We describe people's cultural and religious identifications in terms such as "Russian" or "Catholic," not as "person with Russianity" or "person with Catholicism."  We describe important aspects of people's social roles in terms such as "parent" or "worker," not as "person with offspring" or "person who has a job."  We describe important aspects of people's personalities in terms such as "generous" or "outgoing," not as "person with generosity" or "person with extroversion."  Yet autism goes deeper than culture and learned belief systems.  It affects how we relate to others and how we find places in society.  It even affects how we relate to our own bodies.  If I did not have an autistic brain, the person that I am would not exist.  I am autistic because autism is an essential feature of me as a person."


"3) Saying "person with autism" suggests that autism is something bad--so bad that is isn't even consistent with being a person"



From "I Don't Have Autism. I Am Autistic." by Kassiane Sibley at Radical Neurodivergence Speaking


"It is profoundly disrespectful to insist upon person first language when the person or people you are describing do not wish to be described this way (Kathie Snow of Disability Is Natural, I am looking at you, among others). Part of respecting my agency is respecting how I wish to identify, even if you don't like it." -Kassiane Sibley


Against Person-First:  How I Interpreted What I Read
Okay, I read all of the above soup to nuts.  I tried to reason my way through them all and decide whether I agreed or disagreed and why.  I want to restate that their opinions don't HAVE to make sense to me in order for their preferences to be valid.  I think that's something that gets overlooked when these vitriol-filled debates get kicked off. . . it doesn't HAVE to make sense to YOU in order for it to be offensive to THEM (and the same applies the other way around). 


On Lydia's points:



1)  Why is it impossible to affirm your worth or value as an autistic person without referencing your autism?  Is my daughter's relative worth less or more because she is autistic?  It is not.  Her worth is equal to mine.  It is equal to yours.  "Affirmation of worth or value" that references a condition/disorder/trait neither enhances nor detracts from her value or worth as a human being.  And if I take it for granted that it is in fact impossible, why does referencing your autism utilizing the phrase "with autism" demean or deny who you are?  I don't see the denial.  I don't understand how it is demeaning.  Maybe I just missed the point, which was, affirm your worth as an AUTISTIC person, not just as a person in general.  But I still didn't quite get it.  And I didn't HAVE to.  When I read through and examined Jim Sinclair's views perhaps I better understood it.  Maybe I felt this point was less poignant than the others to me.



2)  I see the tie-in of person with autism to "person with cancer".  That alone is offensive/negative enough.  It's not a disease, it's not something you 'remove' to the betterment of the person in question.  What I struggled with and only partially understand now is the rest:  "When we say "person with autism," we say that it is unfortunate and an accident that a person is Autistic."  We do?  Because I don't know why that's implied.  But. . . I struggled to formulate an argument.


To refute the point, I tried to think of all the positive attributes that we list about people when we say "with _____".  I came up with none that really come up as "traits".  I could say, Jim, the guy with the great sense of humor, but it's not really the same.  You don't say, guy with humor, you say funny guy.  You just do.  You could say Jim, the guy with smarts, but really, we don't say that either, we say, Jim, the smart guy.  The only things I could think of were diseases. . . conditions/impediments, the guy with cancer, the guy with palsy, the guy with a limp, the guy who stutters, things that people think of as "problems".



3)  I mostly agree with this.  When you say "______ Person", that label is an affirmation of identity.  It IS a validation of that person.  But it could ALSO be a NEGATIVE affirmation of identity.  While the first two points seem to dwell on the negative side of person first language, what about the negatives of trait first?  Selfish person, argumentative person, difficult person, crazy person, hateful person.  Autistic person could be considered offensive depending upon the intent of the person using it.  That's why this IS such a dicey discussion, because we have to try to put intent of the user in proper context.



On Jim's points:



1)  I've never understood why saying "person with autism" means I can separate the person from the autism. His argument uses the example of clothing.  People say, the guy with the blue shirt, and the shirt can be separated from the person because the following day the same person might be the guy with the yellow shirt. But they also say, the guy with the great sense of humor, or the guy with a gift for languages.  The sense of humor is no less a part of "the guy".  Where I think back to Lydia's article though. . . we don't often USE "with" language that way. So while I agree that there's still a possible negative connotation about "with autism", I don't agree that it implies you can separate the person from the autism.  But I'll return to this in a minute.


2)  I didn't understand this point at first either.  Even after I read his discussion, which talked about how important features/traits that are part of who we are as people are not referenced this way I still didn't really get it.  I think I get it now.  The point that I didn't take from his discussion of Russians, and Catholics and Parents was that I thought it was apples and oranges.  In my head I was formulating this response that said, but that's different, you don't say person with Catholicism or person from Russia because it's awkward, not because it somehow diminishes the state or degree to which the described person is Russian or Catholic.  And maybe I'm still missing HIS point, but if it's that "traits important to the description of a person are generally used before the person in the English language" then I guess I have to agree.  And Autism IS an important trait when describing a person, so why would you meander around the description by adding an unnecessary prepositional phrase?


3)   The argument here returns to the discussion already reviewed that states, in essence, nothing good ever (mostly) get's described "with ____".  And after initially disagreeing with the statement. . . I read through the description and tried once more to find cases where "with _____" was used to describe some awesome trait.  About all I could come up with was to interject "the gift of ____" in front of it.  Anything else was negative.  The guy with the gift of language, the gift of music, the gift of song, essentially anything that didn't describe the trait as a 'gift' was probably negative, or impermanent (see above).  The only way it was positive was to add a positive modifier, the guy with the "great" hair, the girl with the "great" sense of humor.
It's not that users of person first language INTEND negativity. . . it's just the way most English language seems to be set up: with negativity implied by comparison.


On Kassiane's point:


If the only point argued against person-first language was this one, it would be enough.  This argument stands alone.  If you're in a conversation with a stakeholder and you doggedly refuse to acknowledge that stakeholder's preference, you are being offensive.  Whichever language you choose.


At this point in my 'studies' I had convinced myself that based on the way we use language to communicate with each other about negative traits (which is to say, if it's positive, we don't typically add the "with"), on the language we use to communicate positive traits (affirming our identities with concepts that describe who we are as people FIRST), and on the opinions of autistic adults and how they wish to be referenced, I was against person-first language.
In the interest of fairness, however, I proceeded.


Person First Language:

From:  The Hogg Foundation for Mental Health, brochure, "Language Matters in Mental Health"


1)  "To apply people-first language, ask yourself if using words that label someone with a mental health condition matters in the conversation. A person’s mental health is only one aspect of who the person is. If the information doesn’t contribute to the topic in a necessary or meaningful way, why mention it at all?


2)  It’s no longer acceptable to use the terms “handicapped” or “disabled” to refer to people who have a physical disability. It’s also not polite or respectful to use the term “diabetic” to refer to a person with diabetes. The same holds true for people with a mental health condition."



3)  "Personal Preferences Matter Most"


From:  "Put Me First:  The Importance of Person First Language" by Mary Tobin M. Ed.


1)  "Clearly, when we start by focusing our attention on what people cannot do, we never make room for what they might do. By putting the person last, this is what is being done. It is this attitude that frames how our society views people with a variety of medical diagnoses, identifications or disabilities. We assume they will never do for themselves, so how can they ever be a productive member of society? That being said, there are disability communities that would argue that their disabilities define who they are and that is okay. It is, however, one thing to make that determination for yourself and another to have others do it for you. As teachers, families, therapists and administrators, we are where it begins. This is the power we hold in this battle. When talking about our students, it is only appropriate and respectful to use person-first language and to assume competence. This is another way children and young adults get the message. Our words, like the media, set the example for children and young adults."

From:  "People First Language" by Kathie Snow

1)  "When we see the diagnosis as the most important characteristic of a person, we devalue her as an individual.  Do YOU want to be known for your psoriasis, arthritis, diabetes, sexual dysfunction, or any other condition?


Disability diagnoses are, unfortunately, often used to define a person's value and potential, and low expectations and a dismal future are the predicted norm.  Too often, we make decisions about how/where the person will be educated, whether he'll work or not, where/how he'll live, and what services are offered, based on the person's medical diagnosis, instead on the person's unique and individual strengths and needs."


2)  "Like gender, ethnicity, and other traits, a disability is simply one of the many natural characteristics of being human.  Are YOU defined by your gender, ethnicity, religion, age, sexual orientation or other trait?  No!  So how can we define others by a characteristic that is known as a "disability"?


In Favor of Person-First:  How I Interpreted What I Read
How bored are you with this so far?  I mean, be honest.  Cause I'm having a tough time finishing this fucking marathon, and I'm the one who decided to run it.


On Hogg's points:  


1)  This is essentially what I mean when I say, I refer to my daughter as "my daughter" or "Lily" and not my autistic daughter or my daughter with autism.  It's not an argument for or against person first. . . it's just a guideline for determining when you have to make the choice.


2)  There's really no indication of WHY it's no longer acceptable to do this, so much as it's not polite or respectful.  But WHY isn't it polite or respectful?  And why is it any MORE polite or respectful to refer to someone as "with autism" than it is "autistic"?  This isn't clear to me from this discussion.


3)  No disagreement here, but essentially the opposing side says the same thing.  When in doubt, refer to the personal preference of the person about whom you are discussing.


On Mary's point:


I don't love any point that starts from the premise that it is already clear.  If it was already clear there wouldn't be a debate. . . clearly.  In much the same way the opposing views' extrapolation of what I'm including or excluding and how positively or negatively I mean it. . . "We assume they will never do for themselves, so how can they ever be a productive member of society?"  That seems like quite an extrapolation to make based on the differences communicated by the choice to use "autistic" or "with autism".  But I get the concept that people have preconceived notions of what autistic children may or may not be capable of based on their person experiences with them.  She finishes that particular thought that it is appropriate for us to be respectful and polite, and I agree. . . but I don't know that she's drilled home to me why person-first accomplishes this.


On Kathie's points:


1)  This makes intuitive sense to me, and is probably my biggest confusion when deciding what IS polite and respectful.  Some groups don't want to be identified by diagnosis.  Some groups do.  I can defer to the group's "vote", but I want to understand why it's polite and respectful to one group but offensive to another.  It seems "right" to say I value the person more than I value the person's diagnosis.  The PERSON is important to me regardless of diagnosis, or lack thereof.  


2)  I agree to some extent with the message. . . but I also disagree.  The question she answers "no" is sorta "yes".  Am I defined SOLELY by my gender?  No.  Sexual orientation?  No.  Religion?  No.  Etc.  But do the sum of my traits define me, at least in general terms?  Sure they do.  Obviously I'm not going to start referring to Lily as my Autistic, Catholic, Right-Handed, Female child.  But what I'm talking about is when diagnosis BECOMES relevant.  When does the diagnosis become a relevant defining trait to ME??  When I'm in the midst of trying to decide whether to use person-first language, that's when.  Otherwise, I'm just calling her Lily, or my daughter.  So yeah. . . I'm not tossing it out there like conversation piece.  But when it's part of the conversation. . . what difference does it make where I put it?  Before?  After?  It's there.  It can be seen.  Why is 'after' more polite?  It's STILL a defining trait to put it after the person.  


Summary (I know. . . finally!  You're WELCOME):
Am I on the fence?  Kinda.  But not REALLY.  Because at the end of the day I do have to pick ONE or the other and use it when it's appropriate.  And the choice I make, as previously stated is NOT person-first.  


Why?


1)  People like Lily prefer it.


2)  I'm not convinced that "person with ____" conveys more respect and politeness than it does association with disease or something "bad".


3)  The arguments in favor of using person first "because it is polite and respectful" are the same arguments that autistic people are using against it.


Both sides of the argument seem to base a lot of their issues with the opposing view point on the negative image that is associated with expressing yourself the "other" way.  They can't both be right.  Or can they?  The truth may be that because many people view disabilities negatively, it doesn't make any fucking difference WHICH way we refer to people "with" them regardless of how it is intended because assholes will interpret it negatively NO.  MATTER.  WHAT.  If people were respectful and polite this wouldn't even be a debate.  The people using person-first language and those who are not are doing it for the same reason:  to be respectful, to show pride, out of love. 


Despite not being blown away by person-first arguments, I'll still use it to be respectful to those who prefer it when I refer to their loved ones for the same reason that I'll avoid using it with to those who do NOT prefer it when I refer to THEIR loved ones:  to be respectful, to show pride, out of love.


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And now. . . the aborted post I never really fully developed:  
I personalized it by changing the "diagnosis" to one that has always impacted my life, but which I in NO WAY mean to compare to autism (I reference hardships that are in no way comparable) on any meaningful level apart from lampooning the debate about how we are to reference autistic people without offense. . . 


I remember the day long ago when I received the unofficial diagnosis.  When it came, was delivered deadpan, without any hint of compassion or sensitivity.  Jim, your daughter, Emma is sarcastic.  It hit me hard.  Did you just call my daughter sarcastic?


Recent studies have shown that there is a much higher occurrence of sarcasm in children with one or more parents on the sarcasm spectrum.


As long as I can remember I've suffered from sarcasm.  My brain was just wired differently than other kids' brains.  This created disciplinary problems for me and often I felt isolated from my typical peers, primarily because talking to me made them feel like stupid assholes, when all I was trying to do was make them laugh.


It's been a long road, but I finally accept who I am and I want to talk to you now about the importance of "person first language" when politely referencing similarly afflicted people.  


We don't want to be called sarcastic people.  It's impolite and disrespectful.  We're more than just sarcastic.  Sarcasm doesn't define us.  We are people first. . . we are a people WITH sarcasm, or suffering from sarcasm.  That's right. . . people first.


Years later, my other daughter, Lily would receive her own diagnosis.  She's autistic, they told me.  I remember thinking to myself, "At least she doesn't suffer from sarcasm."
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TADA!!  That's it.  That's all I wrote.  I thought it all dovetailed nicely together and conveyed (after having read the pages and pages above) what I was trying to get at, at least somewhat humorously.  


Follow the links above if you want to delve into what people with huge brains think about the debate.  Oh!  and another great place to look is here:  Autism and Oughtisms.  She does the discussion so much more credit than I did. . . and in WAY MORE SUCCINCTLY.  But she's an attorney.  She has a way with words, and "I. . . Not have way." (name that movie).