Thursday, December 22, 2011

Big Timin' It V - Autismwonderland

photo courtesy of
Back to our regularly scheduled program.  Less snark, more sensitivity.  I was approached to write a guest post for Lisa over at AutismWonderland.  When I asked if she had any topics in mind, she more or less said, "whatever", explaining that as a father raising two daughters any perspective I shared on her blog would be a unique perspective from her own posts.  She went on to say perhaps something holiday related, about expectations.

I agreed at once, and started a blog post on that topic before scrapping it.  Typically when someone asks me to guest post, I'm able to cobble something together relatively quickly, then I just fine tune it until I'm comfortable sharing.  This time I was coming up blank.  

I decided to ignore the whole "expectations/holiday" theme and just get writing.  It had been a week.  I started another post.  I wrote for what seemed like a long time.  I edited it.  I moved things around so that I felt it flowed better.  Then I read through it one last time before scrapping that too.

It was now two weeks since first being approached.  The topic itself was a distant memory at this point.  But I had an idea.  I had a vision in my mind of taking little brain clips. . . like a movie trailer of memories. . . a clip of Lily here, a clip of Lily there, written in present tense, as if it were happening right now, today. . . and after I started writing it, I tied the clips together with a summary.  When I was done, I found that what I had written could be summarized as follows:  A holiday blog post about expectations.  What the hell??  How had it even happened?  BRILLIANT!  Except I failed to give it a title.  MORON!  She doesn't even know I named it, because I'm just doing it now that I'm realizing I didn't.  We'll call it "Gentle Christmas".

Anyway. . . after you read the post, explore her blog.  It is fantastically organized and there's an amazing amount of categorized information and great blog posts there if you think to look for them. . . and. . . her blog logo is THE BEST.  I'm not kidding.  I don't know who ginned it up for her. . . but I strongly suspect she has an inside connection.

>>AutismWonderland Guest Post:  Gentle Christmas<<
or. . . because she's having issues with her Domain Name currently. . . try this:

>>AutismWonderland Guest Post:  Gentle Christmas<<

Wednesday, December 21, 2011

Big Timin' It IV: Just A Lil Fluff

I had a religious discussion with Jillsmo at Yeah.  Good Times. yesterday that was turned into a blog post on her website.  Although she called it a "guest post". . . it's really co-authored by her.  I hope not to burn in hell for it.  If you're religiously queasy. . . probably best you not read it.

>>The Hanukka Dialogues<<

Tuesday, December 20, 2011

EEG, IEP, and a Couple of Tra-la-las

(Title to be sung to the tune of "Merry Old Land of Oz", and you can thank me later if it sticks in your head)

I don't really buy into the whole "sucky Monday" mentality, but yesterday was sorta sucky, and it was definitely Monday, so to those of you who do buy into it, it was totally "a Monday" kind of day yesterday.  

Yesterday we visited Children's Hospital so that they could run an EEG on Lily.  Between last week's fainting spells and today, I had lots of back and forth exchanges with my doctor to figure out exactly what the next step should be.  

After we figured out that the step was, "have an EEG done," we went about scheduling it, and the sooner the better. . . it turned out to be yesterday.  I got all sorts of helpful ideas about how to prepare my child and how to be a good helper in the EEG room which proved totally useless because what they ended up doing was. . . strapping her down.  Ugh.  

I'm getting ahead of myself.  I told Lily all weekend that on Monday we were going to the doctor to get a special hat, and then we would go to McDonald's.  This seemed like a pretty kickass idea to my little girl, who latched right onto it, primarily on the strength of the McDonald's argument.  "First doctor, then McDonald's."  I had called ahead to the EEG tech to explain Lily and what they were likely to encounter and he assured me that they deal with thousands of children, many of whom have special needs and they were fine.  (Well, yeah, because you strap them down and leave them to cry in a room with their parents while the test runs.)

I had asked the doctor about an ambulatory test, thinking that Lily would be okay with having all that shit strapped to her head if she could at least move around, but he more or less poo-pooed it.  His response to me was that the 24 hour ambulatory test only has four leads, and the 45 minute test has 19.  The 19 leads would provide (in his explanation) much more data and allow the pediatric neurologist more to go on prior to our consult.  The tech confirmed after the testing that almost all their EEG work starts out as the 19 lead 45 minute test, which could ultimately lead to other tests depending upon what that one showed.

So Monday arrived and I told Lily, "We're going to see the doctor to try on our hat!" and she gamely finished the sentence, "And then we go to McDonald's!"

"That's right, big girl, then we'll go to McDonald's and get you chicken nuggets," I encouraged.

"And then french fries and orange drink!" she responded.

"That's right baby, then french fries and orange drink."

We got there and were probably the first people there.  It worked out pretty great to be honest, because we sat for only about 5-10 minutes before they ushered us back into the room and the crappy part began.

The technician, who was sort of a "what does bedside manner mean" kind of person, informed us upon hearing that Lily would be difficult to keep still, that she would need to be restrained, and that some parents don't agree and end the test right there.  She asked if we wanted to proceed.

Of course we did.  What choice did we have?  We wanted the results of the test.  The results required she undergo the test.  The test required she stay still. . . it was either restraints or no results.  Illogically it still sort of pissed me off that she asked the question.  I mean by that, I suppose she had to ask the question.  If she'd just  proceeded and we were all like, "What are you doing to my little girl?  We are so out of here, you horrid, horrid woman!" that would obviously have been less preferable, but asking me made me feel like I was betraying Lily.  Like it was MY decision to restrain her.  I was put into a position of having to bless her restraints.  It rankled.

She was very brave (watching Hannah MT)
The restraints essentially amounted to bed sheets wrapped around both arms, then her body.  It looked loose, and draped sort of like a blanket around her.  Lily was cool with it.  What she was not cool with were the velcro straps that went over that.  She was similarly not cool with being forced to lay down while the woman pasted probes to her forehead, moving her head this way and that as we attempted to coo and encourage Lily back to her happy place.  The iPad played a steady stream of first Barney, then High School Musical, then Hannah Montana, then her new favorite story, etc in an a rapidly increasing panicked attempt on the part of Leslie and I to get her "happy" again.  

Amidst the chaos, the woman marked Lily's forehead at measured intervals and rubbed something "to increase the sensitivity of the probes" before daubing paste on the end of each probe, covering it with gauze tape, and putting it on Lily's head.

Lily did great.  Was she happy?  No.  Was she pissed?  Quite a bit, actually, and scared to boot.  Did she do great all things considered?  Absolutely.  Because not only was she restrained with some emotionless stranger pasting shit all over her head, but she was also sleep-deprived.  Because they require the test-ee be sleepy.  They asked us to put her to bed by 10 p.m. and have her up by 5 a.m.  Lily was tired.  I'm not sure I'd have handled it that well, in her place. 

This is about when I tried to sell the "hat" idea again.  Fail.
Tired, and restrained, her head, wrapped in gauze to "hold the first row in place,"  the technician moved on to the next set of probes.  The whole set up process was done in 10 - 15 minutes.  Every time the technician spoke to Lily to reassure her, Lily got angrier.  I wanted to tell the woman to just shut up and finish.  I know she was trying to be reassuring, but essentially I think Lily's viewpoint was . . before you entered my life, I was unrestrained and nobody was pissing me off with wires pasted to my scalp. . . it's hard to blame her for not being super patient with the woman.  Lily was sprouting coiling wires from her scalp like Medusa's serpents at that point.

Strobes flashed in Lily's eyes intermittently (in an attempt to force a seizure, or check her reaction, it was explained).   Each new strobe sequence upset Lily anew until the strobe light ultimately ran its entire program, shut off, and was removed.  Lily was still pretty upset.  Before she left the room, I asked the technician how long the test would take.  She replied that it would be another 35 minutes.  I set the timer on my iPhone so we could tell when we were almost done and regaled Lily with useless "20 more minutes, baby" and "10 more minutes to go" sorts of updates.  I held the iPad (streaming Netflix) in front of her face and she quieted at last shortly after the tech left.  

She was actually relatively sedate (and clearly very tired from being so upset) before the technician re-entered the room and re-sparked Lily's righteous wrath.  But it was the last five minutes of the test.  When the test ended, the leads came off her head and out of her hair easily.  Apparently they have the option of using this paste, or actually supergluing the leads to the heads of their patients.  The really wiggly ones get the super glue treatment, so good on you, Lily!  Anyway, the leads came off her really easily and we freed her from her bed sheet straitjacket then re-restrained her with too-vigorous hugs and squeezes of encouragement and got the hell out of there as quickly as we were able.  The papers we received at the end of the test essentially said that we could expect results in a week, but I know it's Christmas this coming week and New Year's the next, and we have an appointment scheduled with the pediatric neurologist the second week of January, so I wouldn't be completely surprised to hear nothing until then.

"I happy now."
At this point she was tired, and pissed off and wondering where her goddamn McDonald's pay off was, but because the test was over so quickly (start time of 8:15 a.m. and we were out the door by 9:00 a.m) McDonald's wasn't serving her favorite nuggets yet!  We took her home, fed her some of her favorite snacks, gave her a bath (which always calms her, or if not calms, at least cheers her) and dressed her back up in jammies.  

Leslie then took her to McDonald's and she ate nuggets on the way home, and french fries when she got back and was well on her way to returning to her normal self.  We let her hang out for a while before I took her upstairs and put her to bed for a nap, lying with her and stroking her hair as her eyes fluttered shut only to snap open again..  This went on for about 15 minutes before she finally fell asleep.  She was asleep for about an hour when I went upstairs to wake her.

Not sure who's more content here
Papa (my dad) came over to watch her so that we could go to the next kick-ass event in our Monday Spectacular. . . IEP meeting!!  So after an hour, I snuck into her room and shut off her fan (which acts as her version of a white noise machine).  Her eyes snapped open and she stared widely at. . . nothing.  She must have been so deep in sleep.  She lurched around a bit, gaping, as I talked quietly to her and gathered her up into my arms to put on the potty.  She woke up enough to sit on the potty before I again scooped her up and took her downstairs to sit on her Papa's lap.  This turned out to be a win-win, since Papa's lap was warm and soft (and getting softer every day, frankly. . . ) and Lily kicks ass to snuggle with.  And since she's so stingy with her affection, Papa got a present, and Lily did too.

So she burrowed into him (for about 30 minutes until she finally got up and started moving around, he said) while we went to the IEP meeting.

Actually the IEP meeting went fine.  Nobody is mad at anyone.  They're more or less giving us everything we want them to give us. . . or can think of asking them to give us.  We have some i's to dot and some t's to cross, I suppose, but really we're very happy overall with the level of commitment the district has shown to Lily's educational needs.  Everyone is very cool and very willing and so IEP's of late have become something less of the nightmare they once were.  We were out the door about an hour after the meeting began and drove to the daycare to pick Emma up.

The EEG process sucked, but it's a means to an end.  Hopefully that end is results that allow us to appropriately treat Lily if something is wrong with her.  The IEP probably went more smoothly than expected. And the lion that roared in as Monday bleated away sheepishly.

That's how we laugh the day away in the merry old land of Oz! 

Thursday, December 15, 2011

Feeling Faint?

It's been a while since I last blogged.  I didn't really feel like writing anything.  That's not entirely true.  I felt like writing; I always like writing, but I just didn't have anything compelling about which I felt the need to write.  Nevertheless, as I sit here eating a sandwich made from two week-old roast beef cold cuts that smells vaguely of . . . something not roast beefy (because apparently my wife is trying to kill me) and has tiny blue-ish blooms of something sporelike growing on it like an angry bruise, too lazy to throw it out and buy something else from the cafeteria, staring obsessively (as usual) at the number of "views" and lamenting their precipitous decline (which stands to reason after some 'blog-silence'). . .two things occur to me:  1)  That was an extremely long and awkwardly written sentence, and 2)  I have something to share.

Lily appears to have suffered not one but two fainting spells at school.  Fainting, Jim?  Like losing consciousness fainting?  I don't think so, although the details are a skosh sketchy.  While an aide was putting Lily on the potty at school, her legs went limp, and she became very pale, and she fell forward.  The aide caught her.  They gave her some juice and tried her on the potty later and she did it again, this time falling sideways.  Later she was her normal bubbly little non-pale self (olive complected. . . like her mother *insert eye roll).  All of this occurred about an hour after she had eaten a snack, and various possible explanations for this were offered by the school nurse (blood sugar type stuff, etc) but one thing that Leslie (the woman trying to kill me with bad beef) and I wanted to investigate (or eliminate) was the possibility of seizure activity.

Apparently seizure activity is much more common in autistic kids than their typically developing peers.  I first became aware of this after reading a blog by Karen at Solodialogue about her child's recent EEG.  Read that post. . . >>Here<<  

Anyway, after following Karen's adventures we considered approaching our new fancy autism specialty doctor-type guy about having an EEG done.  But I forgot when we first visited him.  Then I forgot after he called us for a follow up.  But the school thingy prompted me to do so.  I emailed him, and he ordered an EEG and his nurse is, even as we speak. . . er, read. . . scheduling a consult with a pediatric neurologist to occur sometime after the results come back.  

I'm strangely unfazed by all of this.  I can't explain why, exactly.  It all reminds me of the process through which we uncovered her autism, and therefore received services.  Maybe she's having seizures. . . if so, at least now we'll know that, and be able to treat them.  I don't know.  Like I said, I can't explain my unfazedness.  

We have a history with medication.  Stimulants to help her focus better.  It was a debacle.  Four medications in, and about 8 of her 34 pound starting weight (I'll have to double check that) down, we stopped.  It changed her completely, and not for the better.  She was angry coming off meds, she wouldn't eat anything, she hated music, it was really really shitty.  I'll blog about that at some point just to get it "on the record" before I completely forget all the details of that particular suckfest.

I digress.  We have a history with medication, but apparently there are non-stimulant medications, used for treating EEG irregularities (seizures) that also help improve the symptoms of autism in some cases.  In a lot of cases, actually.  And while Lily may not have the right set of criteria to qualify as a "good" candidate for that  medicine, it occurs to me that even without that particular silver lining, I would rather know that she is having seizures and be able to get her appropriate treatment, than be blissfully ignorant of them and NOT get her treatment.

see how happy we are?  wtf is going on with my hair?
So for whatever reason, I'm in a decent place about it all.  And I think my wife is so stressed out about everything else (plus I just told her about the actual appointment time about two hours ago) that she hasn't had a chance to be fazed herself.  Monday we have an EEG scheduled.  Today and tomorrow will (to some extent) be spent preparing Lily for a trip to the doctor, and also preparing the doctor for a visit from Lily.  

I've already read through some of the information about the test.  Things like:
  • During the test, your child should lie as still as possible.
  • At times, your child may be asked to breathe fast, to look at flashing lights, to try to sleep.
  • Your child will be asked to lie down on a bed.
And little tips to help out like:
  • The best way to help your child stay calm is for you to stay calm.
  • The most important role of a parent during the EEG is to help your child stay calm and relaxed.
And those sorts of things make me think things like:
  • Are you fucking kidding me?
  • Do you have ANY idea what you're saying?
  • This may be somewhat "stressful" for all parties.
So I've called ahead because there is also a section on the information sheet that asks me to call ahead if I feel my child has any "special needs" etc. that I feel need to be shared.  And the message I left (because nobody was there to answer the phone) was essentially the following bullet points (I'm crazy for bullet-points in this blog post, apparently):
  • Autistic child with ADHD
  • Will not sit still for extended periods
  • Will not remain calm
  • Need to fill out all the paperwork in advance.  I don't want any stray questionnaires harshing my stress-buzz. 
  • Call me and let's get this all figured out in advance.

We'll see what happens.  Nothing like that has happened prior, nor since (this was a day or two ago).

My stomach feels weird. . . nerves, or bad roast beef?

UPDATE:  My wife read the blog and claims she is NOT trying to kill me.  Just wanted to get ONE MORE sandwich out of that package of bruised, slimey and bluish roast beef.  

I said, "It's the ONE MORE" that kills you!" (not at all dramatically)

She rolled her eyes and said, "I'll throw it out."

Thursday, December 8, 2011

Happy Birthday, Lily!

Today we celebrate my baby's (they're really both still babies to me, but Lily will always be the baby of the babies, if you follow) sixth birthday.

The 'youmightbeanautismparentif' blogs are going around hot and heavy in the autism parent blogosphere, and while I don't particularly feel like participating, I'll add this little tidbit as it relates to Lily's sixth birthday:  You might be an autism parent if you have to practice "how old are you" questions before every birthday so she gets the answer right.

We practiced with Lily yesterday.  My wife, Leslie, made up a song.  Lily learns, or at least memorizes, very well to music or song.  This particular song was sung to the tune of "Are you Sleeping".  Some know it better as "Frere Jacque".

"How old are you,
How old are you?
I am six,
I am six,
Lily is a big girl
Lily is big girl,
six years old,
six years old."

Or something to that effect.  Yeah, I know it's not Shakespeare, but she'll have the song memorized today or tomorrow and be answering "How old are you, Lily?" hopefully with the answer "I am six."

This morning it was my turn to wake up the birthday girl.  That made me happy, because I remember last year she woke up by herself and my wife got her and brought her into bed with us to watch TV while we got ready and I was sleepy and forgot to say "Happy Birthday" to her until after my wife had said it, and that made me feel guilty and sad, like hers was the forgotten birthday. 

This morning I turned down the bed rail and sat on her bed.  She looked so pretty and peaceful, with her long lashes warding closed eyes.  I ran my fingers lightly through her hair and said, "Wake up, sleepy head, it's your birthday."  Then I softly sang "Happy Birthday" and pulled back the covers so i could scratch her back.

Her eyes softly fluttered open and I softly but excitedly told her she was six, a big girl.  She didn't reply, content to suffer the backscratch with heavy lids.

"Time to get up, birthday girl," I told her, and picked her up, laying her against my chest, her head resting against the crook of my neck.  I put her on the potty, congratulating her again on how big she was getting, and how proud we were of her.  I left the bathroom and went into the hall, listening for sounds of her relieving herself before returning to hold her hand and walk her down the steps.

The rest of the morning passed more or less as we might have expected.  We sang to her again at breakfast.  She said, with her adorable little speech impediment, "Wiwee is six!" when prompted after the song.

After her poptart (eaten pretty well when the carrot of "iPad" was dangled from it) she sat down on the couch to open presents and play with her iPad.  She has never "liked" opening presents, or even the presents themselves.  It's not that she dislikes them.  She just has very little use for them.  Again, I don't know what she knows or doesn't know about that cheerfully decorated box, and whether the sort of theoretical thought that has to go into the process escapes her.  She sees a wrapped box.  Does she know there's a present inside for her?  That she must unwrap it to see?  That it will be hers when she opens it?  We don't know. We tell her.  She doesn't seem interested.
Thanks, guys, but they're in the way of the iPad
Ironically, Lily, who has always loved ripping paper despite our thousands of pleas to "Be gentle with books, Lily", must almost be commanded to rip it when it adorns a box holding her birthday present.  Then she grudgingly rips only little bits before she losing interest and wandering off.  Eventually the suspense ends up killing her older sister, Emma, who volunteers to help Lily open presents, and we, seeing how little the process actually means to Lily, acquiesce.
*crash* There, that's better.
Leslie brought up the idea of not even wrapping Lily's presents this year, but I couldn't agree.  I guess I keep thinking as much as she loves to rip. . . it's a win-win.  But like many other things I have to learn to make my peace with the idea that she just doesn't care.  How much of the process is me projecting my love for opening packages on her?

She pushed the packages away from her and onto the floor, and after some coaxing and cajoling, we instead finished getting ourselves ready for work and school before returning to complete the process.

We sang "Happy Birthday" as a family.  At the end Lily said, "Cha cha cha", the fruits of her kindergarten learning thus far, to chuckled response.

Toys are hit or miss with Lily, but she'll be getting a Barbie Mermaid (she seems to love all things mer-folk) a military grade protective case for her (my) iPad, clothes, gloves, and shoes.  Sometimes the toys we buy her are partly to satisfy ourselves, partly to satisfy Emma, and partly in hope that the toy du jour will "take".  But honestly, Lily would be just as content playing with her old books and toys as anything new we might think to get her.

She was happy and cheerful.  She played nicely with the iPad.  We sang her song again.  My wife went to work.  Emma helped get Lily's coat on her as I gathered up their backpacks and snack bags (for Lily's kindergarten birthday party), violins and lunchboxes, and warmed the car.

We drove to daycare listening to "Rhythym of Love" by the Plain White T's, and "Breakeven" by the Script, songs she enjoys and with which she'll sing along.

When we reached daycare, I gave her my hand and helped her from the car.  "Come on out, birthday girl," I said!  "How old are you?"

"I'm three," she replied.

And I chuckled and corrected her and took her hand, perhaps a little sadly as I walked her to the door.  She has come so far in the three years since that answer would have been correct, but in many ways when I look back at old videos or read old journal entries, it seems as if she hasn't progressed at all.  It can be frustrating, and tiring, and yes, a little sad.

But today is about celebrating those things that HAVE changed:

Her vocabulary continues to grow,
She sits down in school and pays attention to the teacher,
She asks appropriately for many things,
She sometimes feeds herself with a spoon,
She can pull her pants down to potty and pull them back up when she's done,
She will ask to go potty at school,
She tolerates taking turns,
She allows musical choices other than her own,
She allows TV programs other than her own.

And also celebrating what I hope never does:

She is genuinely happy.

“When I was 5 years old, my mother always told me that happiness was the key to life. When I went to school, they asked me what I wanted to be when I grew up. I wrote down ‘happy’. They told me I didn’t understand the assignment, and I told them they didn’t understand life.” 

― John Lennon

I saw that quote on a blog page just today, and thought it was a great quote, and very appropriate given the post I just wrote.  If nothing else we want Lily to be happy.  And she is.

And as frustrating and tiring and sad as things sometimes can get, they are more often rewarding, enriching, endearing, broadening, loving and yes, happy.

Happy Birthday, Lily.  Happy birthday, big girl.  You are six!

Monday, December 5, 2011

Comment Deleter

So irritated with myself.  For the longest time I've looked at the little screen (visible to the blog administrator only) that lists all the comments for the entire blog.  There is a check box in front of each item, along with three options, "remove content", "delete", and "spam".  For the longest time I've wondered. . . what's the difference between remove content and delete.  To me, remove content meant, "remove the comment from the blog".  To me "delete" meant "delete the comment from the list of comments."

I likened "delete" to what you would do to clear up your notifications.  You get a notification that you have an email, for example.  You go to the email and address it, then decide what to do with it.  You can delete the email and still have a notification, which is silly, so you delete the notification after you've addressed the email.  In my head, my big dumb stupid head, I thought, "If I click delete, it will remove all these comments from  my comment list, but keep them on my blog post.  In that way I'll be able to make sure I address everyone's comments, and, once addressed, I can remove them from my list."

To quote the Biscuit from Ally McBeal, "I like a fresh bowl."  I like a fresh comment list.  Only I highlighted all the comments, hit delete, and it deleted comments everywhere.  Cause I'm a dumbass, apparently.

I'm especially pissed because there were some really good comments on my sciency blog (no actual links, thankfully, but some good stuff nonetheless).

So. . . Please try to remember all your original comments, and re-add them to all my blogs today.  Thank you.

Also, if anyone could tell me what happens when you "remove content" before I lose patience and do that, and it wipes the entire blog out.

Nevermind.  I tried it.  It ALSO deletes the comment.  Only instead of JUST deleting the comment, it says (next to the person's name) "this comment has been deleted by the moderator", which makes it look like the comment was so bad. . . SO inflammatory, that it had to be removed for the good of the blog.

Stupid blogger.  Stupid me.

Wednesday, November 30, 2011

Blinded by Science - Part 1

“Do not worry about your problems with Mathematics, I assure you mine are far greater.” - Albert Einstein

Take Einstein's quote, insert the word Science in place of Mathematics, and you're at the crux of my problem.  I'm not a scientist.  Thank GOD the "far greater" problems (quotes are there not because I'm implying their problems aren't in fact far greater, but because it's from the Einstein quote above) scientists face in studying something are not the problems I face as a non-scientist.  And, while I graduated with a Bachelors Degree of Science in Chemical Engineering, let's face it, I was drunk 50% of the time I was in college and copying off fellow students' papers the other 50% of the time.  I possess a decent working brain and understand rudimentary scientific process, and the fact is I have some worries about the science of autism.  These are not the worries of a scientist.  These are the worries of a parent who is trying to get his daughter the best care he can.

My current worries about Science:

1)  How to determine what treatments/therapies/diets/etc. are backed by science.
 While my understanding of the science of autism research is not what worries me, my understanding of how to interpret its results is.  Why?  Because scientists tell me that the best, most effective treatment for my daughter comes only from those treatments backed by solid scientific data.  So how do I determine that?  yes. . . yes. . . I know. . . Testimonials are not the same as Data.  Stuff like that helps. . . but I need more. 

2)  How to determine whose science is real science.
So.  Who tells me, the primary caregiver, which treatments are or are not backed by solid scientific data?  Scientists?  My pediatrician?  That in itself is a problem.  "The Tale of Two Scientists".  The easiest and most polarizing example of this for folks sympathetic to autism issues is of course, Wakefield vs. The World.  Or Anti-vax vs. Vax.  Leaving all the conspiracy theories. . . drug companies, corporate greed, government cover-ups, etc completely out of the equation, we're left with a group of scientists who made a claim, and another group of scientists who later disputed the claim.  And yes, I know all about what happened to Wakefield in the . . . heh. . . wake of it all.  It doesn't change the fact that as a parent, I can't even begin to tell which scientist is credible and which is not.  How do I do that?

3)  How to understand what constitutes an effective scientific study.
I have read descriptions of treatments that claim to be backed by science that have been ADAMANTLY  refuted as quackery by scientists.  When I look at the claimant's study. . . it looks very sciency.  (Totally a word).  I need to better understand how to read the studies themselves to determine WHY the study was quackery.  The most recent example I can think of is the Mercola study with the National Vaccine Information Center.  I read a review that sliced and diced it.  It was shady, it was shifty, NVIC was in business with Mercola, the participants were being treated by Mercola using Mercola's products. . . how could this study be "Scientific".  And yet, as a parent, looking at it from the outside. . . I have no knowledge of the participants, or the relationship between NVIC and Mercola.  To ME. . . it looks sciency!  Are there things I can look at to see that things were done right?  Buzzwords like double blind, control, group sizes, peer-reviewed journal, etc?

4)  And while we're on the topic (see above) how can I tell what's a reputable peer-reviewed journal, and what's trash?  Because I've seen criticisms of studies that were nothing more than "it came from (implied scoff) The Journal of Insert Technical Sounding Title, so you know it's crap".  All those journals?  Yeah, they look the same to me.  What are the 'reputable' journals?

5)  How to understand whether I give a shit whether the study is sciency or not.  Because, let's face it, before ANY of these studies were backed by science, there was someone who was using them to treat kids with Autism, and at that time, they were NOT backed by science.  I think as a parent this one is one of the toughest and most guilt-filled decisions:  Deciding to attempt a treatment even though it hasn't been "adequately" studied.  Whose fault is that?  The lack of science doesn't necessarily disprove the treatment, it just means more study is needed.  I want to make the "right" decision, but science is telling me that the right decision is only to use treatments with proper scientific data backing them up.  And what we, as parents of kiddos on the spectrum know, is that time is of the essence.  So it's not like I can really afford to wait around letting my child's best, most treatable years tick away while scientists reach their conclusions.  Or can I afford NOT to wait?  If I decide to try a treatment or therapy or participate in a study with my daughter that later turns out to be (hindsight) backed by science, I just bought that much more time.  If I decide to try a treatment with my daughter that is later debunked by science, I'm the rube who wasted valuable therapy time on quackery.

Science is heady stuff, and scientists are a snobby and defensive (but ADORABLE) little group of know-it-alls.  No offense, scientists, but you know you are.  Hell, it's practically a point of pride.  When I read some of the stuff you write I think, "Wow, these people are really bright!"  And then in the next paragraph I read this same seemingly brilliant person poo-pooing the right of someone to criticize a study or therapy not based on the merits of that person's comment or criticism, but solely because that person lacks an advanced degree in that specific field of study.  When it comes to choosing care for ourselves or for our children, it's too important NOT to have an opinion and/or take a stand, and none of us have time to go get that doctorate in neurology just so that we are then welcomed to the debate on the efficacy of the treatment du jour.

"I don't believe it!
There she goes again!
She's tidied up and I can't find anything!
all my tubes and wires
And careful notes
And antiquated notions"

What I'm hoping I can generate from this blog, on its very own page (I'll assign a new tab to it after it's been up a few days), is a list of sciency links.  I have some already.  And I don't mean sciency bloggers necessarily, although I'll certainly post those as well.  I mean links to trusted sites that compile treatments or therapies that are (in the eyes at least of some scientists) appropriately sciency.  I don't intend to provide a database of what is or isn't. . . just links to resources to help me (and you, if you want) find out which studies make the cut, or perhaps links to "how to" posts that help you, a non-sciency parent, make sense of the data. 

I don't know how much I'll break it out, categorize and subcategorize, etc.  So I'll sort of play it by ear right now.  I don't have the answers.  Just lots and lots of questions.  I'm hoping you folks in the blogosphere can help me with this.  I know I'm still new to this autism parent blogging thing, so I'm worried I won't get the sort of feedback I'll need, but it's definitely worth a shot.

We need all the help we can get.

Monday, November 28, 2011

Weekend Update

I don't love Thanksgiving.  For starters, I don't love turkey, and I'm pretty tight-lipped with my emotional from-the-heart givings of thanks, so an uncomfortable holiday centered around a meal I'm only lukewarm about. . . it's nothing I want to devote a lot of time and attention to with a few exceptions:

Sorry about your car, but at least the McRib is back!
1)  Sometime on Tuesday evening, a tanker truck carrying black driveway sealant spilled its contents across a 39 mile stretch of the Pennsylvania Turnpike.  I was watching the news on Wednesday morning, mouth agape, as I saw pictures of what it did to people's cars.  When I left for work that morning, they said at least two hundred cars had been affected.  Most, if not all, were traveling to some Thanksgiving destination, and had to stop.  What a monumental fuck up.  The Turnpike authority blamed the trucking company.  I'm sure the trucking company will blame whoever loaded the sealant.  I'm sure they'll all look for insurance to cover it, and, as I watched, i couldn't help thinking. . . all those people are stuck paying for ALL of it, until the dust settles.  Nightmare.

2)  Mississippi cousins visited, and it was really nice to see them again.  My recently wedded sister-in-law and her husband came down, and it was also great.  Some highlights:  visited downtown, ate out, ice skated, roller skated, had Thanksgiving. . . some lowlights. . . lots of people, lots of activity and autism, not a super mix.  Honestly though, up until about 8 o'clock at night on Thanksgiving, Lily did great.  She started to spin a little out of control as the evening went on, and she has a tendency to kick my in-law's dog (okay, not so much tendency as uncontrollable need) but all in all she was very good.  The iPad, and all the one-on-one attention from her cousins and aunts and grandparents really helped.

3)  Lily has been using some really great appropriate language lately.  Her potty training seems to have stumbled a bit lately, but her special ed teacher offered that sometimes when her kiddos see a change in expectation/priority (we had prioritized potty training before Lily started Kindergarten in the Fall) they see some great advancement in the new priorities at the expense of some of the old ones.  She feels like Lily is doing a great job in class, but has seen a drop off in her toileting.  That's sort of a wash, I suppose.  Some of the things she's been saying:

Emma and Lily:
"Are you okay, Emma?"
"Yeah, I'm okay, Lily.  Are you okay?"
"Yeah, I'm okay."

The next few have been going on more frequently since we started playing with her AutismXpress app.  it has 12 faces on it, each describing a feeling.  She pushes the button and they get big and make a sound and animation associated with that emotion.  She perseverates over it.

Me to Lily:
"Lily, are you happy or sad?"
"I don't know, Daddy."

Emma, look at me.  Are you happy or sad?
Emma and Lily:
"Emma, look at me, are you happy or sad?"
"I'm happy, Lily!"
"Oh that's good, you're happy!"

"Emma, are you happy or sad?"
*silence from Emma"
"Answer the question!"

We hosted guests at our house, so I had an inflatable Queen size mattress in the basement.  I decided to let Lily and Emma loose on it before I deflated it and put it away.  It was such a hit, I'm not sure I'll EVER put it away.

"Daddy, it looks like fun!" followed by "Daddy, you want a turn?"

Lily drools, especially when she gets stimmy. . . or spitty, since her stims often involve her blowing raspberries.  But she'll wipe her mouth off if prompted.

"Lily, can you wipe your mouth please?"
"Oh, I'd be happy to."

And finally, her sister left to go upstairs to tell her mother something before returning.

"I want Emma."
"Well, you're in luck.  Guess who's back?"
"Oh, Emma!  Emma came back!"

It was all very cute.  Then she peed her pants.  Not really.  But it brings the whole appropriate speech vs. potty training theme I was going with full circle, so it makes my point seem more cogent if I say that.

4)  We got two trees up.  One is full decorated and the other is lit, but undecorated.  Within 10 minutes of being introduced to the newly decorated tree, Lily had three ornaments on the floor.  After "parenting" that frequency dropped down significantly.  Distraction, timeouts, trips to the aforementioned inflatable bouncy mattress-o-fun in the basement. . . whatever it takes.  Only four more weeks. . .

There was other stuff, some of it awesome, some not so awesome.  It was a very busy weekend.

Tuesday, November 22, 2011

Mall-y Old Saint Nicholas

Way back when this blog was new and shiny I posted a question about autism charities worthy of my tax credit contribution.  The overwhelming responses I got (not necessarily indicated by they underwhelming number of comments) were 1)  don't give to Autism Speaks and 2) find a local charity more directly involved with the autism community.

Lydia over at AusticSpeaks suggested A.B.O.A.R.D.  I had given to them the previous year, and they are local, and they had helped Lydia (who is also local) personally, so I felt like that sort of sealed the deal.  I gave to A.B.O.A.R.D.  They send out a weekly (or so) newsletter to contributors.

Within about a month of my donation, I received an announcement from them via their newsletter (sent to everyone on their mailing list).  Don't bother reading through it, the title pretty much say it all.  The mall was closing, but leaving Santa and his helpers in place, dimming the lights, providing activities, leaving the play area accessible and giving time slots for Santa pictures all to spectrum kiddos who registered.  

My wife got a similar email and we took turns sending each other identical emails saying what a good idea it was and asking each other if we thought it could work.

We agreed we wanted to get Lily to see Santa, and this looked like an awesome way to do it.  A day or two before the event, my wife called ABOARD (i'm not typing the periods anymore) and found out that all 50 of the time slots were all full, but to come anyway and talk to them and they'd see if they could get Lily in to see Santa.  We're such slackers.  I don't know why neither of us read about the registration.

Don't you touch my puppy or I'll cut you.
This past Sunday was the big day.  When we showed up, we got a number, 37.  That's a big number.  We were there about 15 minutes, listening to the story being read by a woman from . . . well I never found out where she was from, but she had a giant fuzzy bear with her so I figured she was probably going to be okay in Lily's book.  Lily didn't want to sit, and wasn't particularly interested in the story (although it's one we read to her on occasion about Curious George visiting a hospital on Christmas) but she digs furries.  

We hung out on the mat for a bit, dancing and spinning and occasionally revisiting our lounging bear friend, until it became apparent that additional entertainment would be necessary.  While my wife (have you noticed I never give her name?  It's a privacy thing, but honestly, you'd think I'd just ask her if it was okay and get an answer so I could include it wouldn't you?  I never remember to ask.  She follows the blog, maybe she'll read this and tell me) and Emma checked out the crafts, I took Lily to see the train, the malls version of the Polar Express (which wasn't running that evening).

At the train we walked back and forth from the engine to the caboose.  I asked her what color it was and tried to get her to count the cars (four) and identify engine/caboose etc.  She says caboose so friggin' adorably.  

"Let's go to the caboose, Lily!" 

"CABOOOOOSE!!" *run run run*

"What color is the caboose, Lily?"

"It's geen, caboose is geen!"

"Good job!  Let's go see the engine now!"


"How many cars are there on the train?" *silence* "One. . . "


And so on. . . 

After we'd played that game out, I approached the line with my ticket and asked how far along we were.  

"We're calling 12, 13 and 14 right now," was the reply.  

Oh.  Oh dear.  So we made our way over to the play area.  We were the first family to utilize that particular time killer, but were quickly joined by other families in the high twenties and low thirties (ticket numbers, not age. . . well. . . maybe both).  

Emma and Lily walked up the steps of one of the play bridges (meant to approximate the bridges over the three rivers here in Pittsburgh) and slid down the other side countless times.  Each time Lily climbed she would stand and chatter happily at the top of the bridge until Emma would prompt her, "Okay, Lily, time to go down the slide," at which time she'd dutifully plop down, slide to the bottom, then spin around, run to the other side of the "bridge" ascend once more, and wait for prompting.

A family with an NT son and AS son arrived a bit later.  It was cute the way their interractions mirrored Emma and Lily's.  The sons were older than our daughters were, but the NT son stuck really close to his AS brother.  He may have been 14 or 15.  The spectrum thing struck me then.  He seemed really coordinated to me.  He was running all over the place, jumping and somersaulting down the slides and steps, gracefully, even acrobatically.  He was so much more developed than Lily from a gross motor perspective, but he was completely nonverbal, and eventually (after much running around) he got a bit overstimulated and you could see him shrink into himself.  He became visibly upset, his face a mask of sorrow, and his parents asked him if he'd had enough and wanted to go home, and he signaled his assent.  They tied his shoes and he sat in a stroller.  He was completely wiped out.

It's just such a huge autistic world out there.  This kid was SO different than Lily.  As they left, the boys' mother gave me their ticket (we'd compared numbers when they joined us, they were 32).  My wife had taken the kids up to the bathroom while I held down the fort (purses, pink sling bags, coats) and I texted my wife that I'd meet her back at Santa, because a few moments earlier one of Santa's elves had been looking for "28" so I knew at 32 we were getting close.

Maybe we weren't as close as I thought, but we weren't TOO far off.  Emma crafted a letter to Santa on behalf of Lily and herself while Lily and I returned to the train and waited.  "31" was a gigantic group of kids from one of the local special needs schools so they took forever.  "28" had never been found.  We were next.  I tried to get Santa's helper to let us fill out the paper work BEFORE our turn but to no avail.  If I have any complaint with the process it would be that. . . kids on the spectrum/ADHD/whatever. . . let the parents fill out the paperwork before hand, because we had at least 45 minutes, then there are no stumbles at the finish line. . . the promised land. . . The North Pole in Pittsburgh.  BUT. . . Lily was a champ.  No stumbles there.  Just sayin'.

Sir, please remain a respectful distance from Mr. Claus
And take a look at this badass Santa.  Every year the Ross Park Mall gets a kickass Santa, but this Santa is the best I've seen.  
Santa Checklist:
Real snowy white beard - check
Eyes, how they twinkled - check
Dimples, how merry - check
Cheeks like roses - check
Nose like a cherry - check

Finally we were in the home stretch.  Lily's biggest issue was being confined to Mr. C's lap.  She was not afraid of him, and she honored his personal space enough not to tug on his beard (although she did give the little snowball tuft at the end of his hat a tug once or twice).  

After they sat (and the professional photogragher got three pictures from which we selected) Emma bent Kris Kringle's ear about puppies or some such while Lily, freed from his lap, orbited in fascination until Emma got down.  

When it was time to go she told him (prompted) "Merry Christmas" and (unprompted) "I'll see you soon".

The money shot.  Is. . . is that appropriate in this context?

On the way out we sort of let Lily walk ahead of us; pointing the way, and letting her go.  The mall was closed so there was ZERO mischief she could get into.  At one point Emma started laughing and saying "she is SO far ahead of us" and indeed, she had like an 1/8 of a mile head start on us.  I ran to catch up.  Lily, seeing me chasing her, ran to get away.  Emma and Lily and I went tearing ass off through the mall, giggling like maniacs until I finally collected her, whooshed her off her feet, then set her back down like an already spinning top, to tear ass off again, while my wife sauntered unconcernedly down the length of the mall.

When she finally caught up, I left Lily to her while Emma and I approached the exit.  I tried to get a picture of this, but failed.  Emma and I stood at the entrance, which goes west about 50 yards before T'ing with the rest of the mall. . . left (south) is Macy's, right (north) is the mall at large.  Standing at the exit, looking back, Lily was running away from her mother towards Macy's, giggling.  Her mother was looking at us, also giggling, running after her.  Then they disappeared around the corner of the T, before re-emerging, Lily again in the lead this time running north, my wife again trailing. . . still giggling helplessly.  *DING*  like a duck in a shooting gallery, reversing then *DING* re-reversing AND SO ON!!!  This must have happened like five times.

At first I thought she was playing with her.  But Lily was legitimately eluding her, like when Scooby and the gang are getting chased by the monster, and they keep emerging out of different doors sometimes being chased, sometimes chasing, until they all crash into each other in the middle of the room, and they pull the mask off the monster and the guy underneath says "And it would have worked too if it wasn't for these darn kids!"  Only they didn't crash.  My wife needs to get on the treadmill, or Lily is a future Olympic sprinter, because it was PATHETIC how long she was able to stay just out of her grasp.

The whole event was very cute, and really our first time capitalizing on an event in the "community".  I embraced it as an opportunity to do more than pay lip service to my acceptance of all of this.  It occurs to me from time to time, that the same sense of community I feel reflected in the people who comment/read this blog, and whose blogs I, in turn, comment and read also exists in "real life" (no offense intended, I'm aware you are all real as well).  And that the enjoyment/encouragement/support as I get from the people here (in this blog) exists "out there" in my community, down the street, at the mall, wherever.  So this was nice for me.  I'm much more outgoing here than I am in person, so it was a small step, but maybe next time at the next event I'll recognize the family who gave us their number and give them a "hellooooo" and offer the secret Autism Handshake and chat them up the way I chat you people up.  Seems reasonable, right?

The event was nicely done and organized.  I already feel good about having given to a charity that is involved directly in the community and helping kids with autism develop and have fun, adults with autism cope and get jobs, and parents of kids on the spectrum, participate and feel less "judged".

Emma sometimes complains when we split the kids up one kid per parent, to their respective events.  She likes when we're all together as a family.  This was a great chance to do that.  She loved seeing how Lily reacted to Santa.  And she was so proud of her for not yanking his beard, spitting in his face, or poking his eyes out (she is TOTALLY on the "Nice" list now).  

It was comfortable and fun and I never even ONCE looked over my shoulder to see if I needed to scowl malevolently at some douche for judging my daughter for spinning and dancing or judging me for allowing it.  That alone was worth the trip.