Friday, February 21, 2014


No.  It's not okay.

A parent made a statement about being torn over the use of the question, "Okay?" when requesting something from her autistic son.  Her reasoning was that she didn't want to parent so strictly.  I get that.  Saying "Okay?" seems to soften things.  It makes demands seem friendlier.  Unfortunately, it's confusing and teaches kids the wrong lesson.  It's a habit.  And it's a hard habit to break. And before I write about it, I want to say...I do it.  When I notice I'm doing it I stop.  I'm not saying you're a bad parent if you do it too.  I'm just saying you'd be better if you didn't; I'd be better if I didn't. 

The beauty of "Okay?" is that its sloppiness allows me to be a lazy parent, its confusing permissive vagueness complicit in my parental languor.  Picture me sitting on the couch, for example, a beer in one hand, the remote in the other.  Lily walks past holding her coat in her hand.

"Lily, put your coat on the hook, okay?" I ask, sipping my beer indifferently.
"Meh...alright," I sigh in response.

At least I'm not sending mixed messages.  She was given a choice and she chose "No."  If that's what you're trying to teach your children, then using "Okay?" is okay.  Okay?
Because by introducing the question "Okay?" at the end of a demand, we are unwittingly giving our children a choice we may not have intended.  What if the answer to your question "Okay?" is "No."  What's your next step?  Ignore it?  Argue it?  Overrule it?  By giving your child a choice and then overruling it you are succeeding only in confusing the kid, and teaching him/her that there really is no choice.  No = Yes.

One way to fix this is to stop placing question marks on our expectations for our children.  The other, harder way, is to learn not to put demands on our kids that don't really matter, limiting our demands to those that count.

We're not perfect about this, but one thing that we periodically focus on as Lily's parents (that apply to Emma as well, but probably we never would have noticed) is making demands count, because as parents we always need to be ready for the right counter-measure to our kids' refusal to do something we want them to do.  Like parental chess masters, we have to do a better job of planning our moves in advance.

  • "Lily, would you please put your coat on the hook?"  This is a question.  If the answer is no, what do you do?  Overrule?

  • "Lily, please put your coat on the hook, okay?"  This is a question too, and a bit of a wishy-washy one at that.  Do you want her to put her coat on the hook?  Do you not?  Same issue if the answer is no.

  • "Lily, please put your coat on the hook."  This is a demand.  It's a polite demand, but it's a demand.  There is no built in option or question.  It is clear.  And refusal means a fight.

Is it important?  Certainly if part of your child's school ritual is learning to place his/her belongings in a cubby or on a hook each day, then reinforcing that at home is also important.  I'm prepared to enforce that demand if Lily is reluctant to comply.   I'm prepared to argue, punish, etc.

What we as parents have to be careful of is enforcing the demands that we really don't care about.  Because when it's no longer a choice or option, what happens when your son or daughter rebels against it?  Now you're essentially backed into a corner.  Maybe you even realize that it's a stupid request, but you've made it.  Backing down sends the signal, "It's okay to ignore parents' demands."  How important is your victory in the subsequent battle of wills?  If you cave, then she learned that she can get her way if she battles back hard enough.  If you win, but at the expense of a long battle and an emotionally strung out kid, was it worth it?

Where I'm most guilty of this is at the dinner table.  Typically the corner I back myself into is the one where I require Lily to take "one more bite" before she can be done.  How important is that last bite?  Why am I fighting so hard for it?  What if she won't eat it?  What if she gags on it or spits it out?  Has she eaten enough?  Is she full?  What purpose does "one more bite" serve?  I need to work on that.

Certainly any demand a parent places on a child can be appropriately argued against if the child has a compelling and logical reason for noncompliance.  But where kids with limited communication are concerned, specifically those who best succeed when given clear, logical, and literal instruction, our attention to the importance of our clear instruction, as well as the differentiation between what is necessary and what is optional becomes even more important.

Consider eliminating "Okay?" from your demands, and consider too how you communicate questions and demands to your children.  Ask yourself these questions before deciding how you want to phrase yourself.
  1. Are you asking or are you telling?
  2. If you're asking, what if the answer is no?
  3. If you're demanding, is it worth a fight?

flow chart

Thursday, February 20, 2014

Lip Service

by Jubbified,,
No changes made to image.

Something I forgot when I posted the snow day story and videos was a thing that happened to/was said by Lily.  I had hit the post button and the story had probably been up a couple hours before it occurred to me and I mentally slapped my forehead with the palm of my figurative hand and said in my mind, "ding dang it all...I forgot to mention that!"

The thing that I forgot to mention was this:  Lily, upon her second to last sled run got to the bottom of the hill and said, "I bit my lip."


Oh, you don't understand.  (or maybe you do, but I'll explain anyway, or it's my shortest post ever and I do love to drag things out)

We never really know how aware of her own body Lily is.

Cuts/scrapes...they really don't get a lot of play with her.  Does she feel full when she's eaten enough?  We try to teach her, "My belly is full" so we don't keep trying to get her to eat when she's full, but even when she's said that, it's only sometimes true.  She may be sick of a particular flavor, for example, but will happily continue eating some other food.  Does she recognize when she is in pain?  Can she figure out where it's coming from?  We prompt her..."Does your ear hurt, Lily?" and she says, "My ear hurts."  Does it?  Or did she just echo our own words back to us?  She has told us in the past, and we were ironically so excited that she was able to communicate her pain to us. 

What do we know and what don't we know?  We know, for example, that when placed upon the toilet at some "reasonable" frequency, she understands how to use it and does so successfully.  We don't necessarily know whether or not she understands the feeling of "having to go" that might prompt her to independently tell us, "I have to go to the bathroom."  She has been initiating this more frequently, which makes me feel like that feeling of awareness is dawning, but there have also been misfires where she has been placed on the toilet, gotten off seemingly not having to go, then having an accident minutes later.

Lily is hyposensitive and her pain tolerance is pretty high.  She rarely cries.  What does she feel?  One of the things that we looked forward to with her big sister, Emma, was the day when she would be able to tell us why she was upset, not just cry about it and leave it to us to eliminate...hungry/wet/sleepy/sick... And to some extent we're still waiting for that day with Lily, although we've learned to interpret her nonverbal communications much better than we were ever forced to with Emma.  "I have an ear ache" still would beat the hell out of not eating, sleeping like shit, and screaming "NO" to everything at the top of her lungs in response to any question.

So at the end of her ride down the hill with Emma, she said, "I bit my lip," and I was pleasantly surprised.  I immediately bent down to ask if she was alright.  Sure enough in the middle of her lower lip a tiny trickle of blood was visible.

"Are you okay?" Emma echoed.
"I'm all better now," she said, and took one more trip down the hill with her big sister.

Minor pain.  Awareness of where it was on her body.  Understanding that she was okay.  All that stuff seems mind bogglingly complex to me when I break it down and try to "think through" what the brain has to do in order to process it all, and yet it all seems so ridiculously trivial when I think that it's typically something just taken for granted.

Monday, February 17, 2014

Snow Day

It's a familiar story in our house, but one that I can't allow myself ever to take for granted.  So I'm blogging it.  Yesterday as the soft snow gently fell, articulated crystals bobbing on light gusts, settling like a cotton cloud on my goddamned driveway for the elebenty zillionth effing (you're welcome) time this winter...Emma offered to take Lily outside, just the two of them, to play in the snow.

And that was fantastic.  Lily has been stir-crazy the last couple weeks, stuck inside because it's impossible to keep her hat and/or mittens on her, and it's been too cold to let her go without.  Emma too was stir-crazy, but because she hates being "bored".  And we were both too busy playing catch up on laundry and cleaning, the result of a busy Saturday away from the house to indulge either of them with sledding.

The problem was and is, how to get Lily's gloves on and keep them on, how to get Lily's hat on and keep it on.  Lily's fingers go limp when you try to put gloves on her, and it's extremly difficult to squish them into mittens to say nothing of gloves.  Leslie tried as Lily squirmed and fought.  She succeeded in getting the first mitten on and was working on the second when Lily grabbed the first mitten in her teeth and off it came.  And so on.

BUT...Eventually she was dressed and ready.  We walked to the door to watch as she prepared to descend the steps.  There was no sign of Emma yet; she'd gone to the garage to get the sled.  I started feeling uncomfortable.  Lily investigated the porch tentatively. 

"Your sister is out here waiting!"
"Are you comfortable with this?  I'm not comfortable with this," I grumbled, anxious, in an aside to Leslie.  I started getting my boots on.

Emma joined her sister on the sidewalk looking down the short hill into the cul-de-sac.  She hopped on the sled, beckoning Lily to join her.

"Emma's turn!" she replied.
"You want me to go first?" Emma asked.
"Yeah!  First Emma, then Lily's turn," Lily answered.

Emma lifted her boots from the snow, putting them inside the sled and it slid forward, gathering speed as it compacted the snow in front of it.  A few seconds later, Emma was standing, brushing the snow from the sled and her snow pants, lifting the rope that was fixed to the prow, and dragging it around the  mailbox, up the driveway and back.  Lily's hat was off and I knocked on the door to get Emma's attention, telling her to fix it.  Emma did...but not well.  She positioned the sled again, sat again, and again beckoned Lily. 

Lily fought her.  Emma stayed patient.  She coaxed.  She cajoled.  She never lost patience and left her sister behind.  Just kept trying.  The hat was off, but tied so that it was still attached.  And then Lily sat in the front of the sled.  Emma muscled her around so that she was sitting snugly in front of her.  She picked Lily's boots up and placed them in the sled and then asked Lily if she was ready to go.  I didn't bother asking Emma to fix the hat again.  Just stood inside the house watching the kids enjoying each other.

"One..." she started.
"Two..." Lily continued.
"Three!" Emma finished, picking up her boots once more as the sled inched forward.  The two girls sledded to the bottom of the hill, the sled skimming the packed snow more smoothly now.  Emma braked hard with her boots in the snow to slow the sled and stop them just before the street.

Halfway up the hill Lily's mittens were off.  I finished getting dressed and joined the pair outside while Leslie and Dobby, the new kitten, watched from the house.  There was more fighting.  The hat was off again and I secured it to her head once more before eventually giving up and just pulling her hood over her head.

I let Emma get Lily back on the sled while I shot video.  I gave up, shutting the camera off and deleting 30 seconds of Emma coaxing before starting it up again when Lily sat down.

"One...two...three..." and down they came again.

Lily had fun.  Emma tried to pull her up the driveway, slipped, then tried again.  I walked through the snow to help her.

"I can do it," she said.  She slipped again though, and I took the rope from her and pulled Lily up the hill.  This time I brought her to the top of the hill again.  She made no move to get off the sled.

"You ready?" I asked.
"Get out of here, daddy," she replied.  Good enough for me.  I pulled the rope and started the sled moving.  I ran down the hill beside her, keeping pace in case I needed to rescue her.  But I didn't.  She was having fun.

This time Emma took her back up the hill.

"I know what I did wrong," she said, keeping her boots on the dry bit of driveway that had been shoveled and salted and off the iced tire tracks from the weekend's use prior to shoveling.

A few more mitten maintenance visits, and I was ready to call the adventure to a successful conclusion.

"One more time," I told Lily.  And she climbed aboard agreeably with Emma behind her.  Though when Emma had pulled her back up the hill she countered.

"One more."

I smiled, nodded my head and said, "Okay, Lily, one more."

And down they went.


After the sledding was over, Leslie was telling her sister about it over the phone.  She mentioned what a pain the mittens were and I chimed in, "I have an idea about that."

When she got off the phone I suggested this...

It's not a new idea or anything.  It's just a twist on running apparel, which comes with a hole in the sleeve to allow you to put your thumb through it so that when you pull on gloves, the sleeve stays with the glove.  At least that's the way most people wear it, but in this case I'm suggesting you do it the other way...put the glove on first, then put the sleeve over the thumb. 

It might require a little sewing if you can't find sweatshirts in your kid's size that have the thumbhole "feature" in them.  Because I think if you just cut a hole it would rip, but here it is, essentially:

The funny thing was, after I suggested it, Leslie said, "Her sweatshirt has that thumbhole aready in it."

Next time.

Tuesday, February 4, 2014

A Letter to My Autistic Daughter to be Opened at Graduation

I feel a little guilty sharing this here, and I think the only reason I'm doing it is because it was always my plan to write something of this nature on the blog.  It's only now that it's a school assignment that I'm actually getting to it.

A little background.  Before I blogged, and after Emma was born, I bought a little leather-bound journal that I intended to write to Emma.  The idea at the time was that this was going to be something that I wrote to her that she was not allowed to open and read until she had kids of her own.  I wanted something she could look at with her own kids and see how we struggled and floundered and how we didn't always have the answers.  And how we loved her.  And I wanted it to be my voice in her ear when perhaps she might prefer not having my actual voice in her ear, but still needed help or guidance.  It was also this morbid idea of a voice from the grave.  What if I wasn't around when she had kids?  Here were my words, preserved.  

From the second journal...
I struggled with it.  I had a difficult time determining my voice.  I wrote in it pretty regularly, but I struggled writing to Emma adult-to-adult the way I had intended; the way I wanted it to read.  I shifted back and forth but mostly it came across (in my opinion) inconsistent, amateurish, and uncomfortable.  I was writing to a two year old one day and the next I was writing to the 30 year old to be, it vacillated between stuffy and formal, and profanely casual.  I filled the journal and didn't buy a new one.  And then Lily was born and weeks turned into months and then years until I once more bought a journal and began filling it in, this time for both kids.  There was a lot of guilt about having a journal for Emma but not for Lily.  And so the journals became for "both kids". 

It was essentially a blog, but instead of typing and hitting enter, I was smearing ink across fingers and pages and giving myself hand cramps.  So I started the blog.  When it started (here's the first post), it was with the idea that autism and Lily probably belonged in a separate space all their own.  I was 'marketing it' to autism parents.  I had started writing unread blog posts prior to that about Emma's adventures, but it was only after I immersed myself in the reading others' posts and writing my own specific to autism that I was really "all-in" blog-wise. I felt guilty about having a "whole family" blog and a Lily-specific blog, and eventually merged the two into one.  Okay. 

That is the story of how this blog came to be.  That is what this blog arguably (now) is, a series of journal posts to my children that they can someday read and hopefully get a little comfort/support from, while also making me a SHIT ton of money. least they'll have the posts.

We received an assignment to put together a time capsule for Lily.  I love those things.  I don't know what all is included, but what I'm focused on here is:  "A letter to Lily for her to read at graduation."

Without further adieu...

Dear Lily,

Hi, Peach. When you read this eleven years will have gone by.  The first thing I want to tell you is the last thing I say to you every night before you go to bed.  I'm proud of you.  I love you.  I believe in you.  Past.  Present.  Future.

It seems to me that by writing this I'm attempting to predict the future.  Nobody can do that.  The parents who think they can are misguided.  Whether they think their child will be a doctor or football star, an engineer or a pilot, a stay-at-home parent, live in assisted-care or stay at home all his or her parent knows the future regardless of their child's neurology.  The hoops and hurdles God places in the paths of all His children are always different and are never lept through or over nor stumbled across the same way by any two of us.  The branching results of all our decisions, good and bad both, lead us each down a path that is unique to our own experience.  And utterly unpredictable.

You work so hard.  You jump through all the hoops and over all the hurdles we as parents place in front of you.  Sometimes there are so many.  Sometimes we don't even understand why we think you need to jump through them.  We do it because we think they'll help.  We do it because we're told they're necessary.  We do it because "research indicates that...".  We don't know.  We don't have the answers.  We just want what's best for you, and we pray the decisions we make will help lead you there.

But I want you to know this...

You, 8 year old Lily, child of the present, are such a happy child, so full of life and energy and joy.  Watching you spin and jump and play, a broad grin splitting your face, an infectious and mischievous giggle bubbling up and over as we tickle you or play with you we can't help but be happy too.  Every day when I bundle you up and walk you out to the school bus we hold hands and I tell you to stand in the driveway to be safe from cars, and you get so frustrated with me and I worry that you're going to have a meltdown, or throw your glasses or refuse to get on the bus, but when the bus gets there, you tell me, "I happy, daddy," and climb aboard.  On graduation day, this past Lily is the future I want for you in adulthood, the present you now inhabit in childhood:  Happy Lily. 

If you never become a doctor, if you never graduate from college and get a job, if you never go to college, if you never leave our home, if you never learn to read this letter, if you always need help to eat...but are happy?  Then I will be happy.  This future is certain and fixed and utterly predictable.  This future is unchangeable because it holds within itself all the possible divergences from my "expectations" that don't matter when compared to your happiness.

I may not be able to predict what you will one day become.  I may not be able to forecast how far you will go, or how much you will change from the sweet little peach you are right now, but after working so hard and jumping through so many hoops, after all the drills and therapy and frustration, when graduation day comes for you, if you say nothing more than, "I happy, daddy," well then I think we'll consider those 11 years time well spent.

I promise I will always have that end goal in sight.  I promise not to lose sight of your happiness while chasing after misguided expectations of a future that cannot be predicted.  I'm not saying you won't still be frustrated with me.  I'm not saying you won't still have to work hard to jump through my hoops (the ones that make sense and the ones that don't).  I'm just saying that those branched paths of your life within my control that don't ultimately lead to your happiness will be pruned if they can be.

Every night after prayers as we lie in bed I tell you I love you, I'm proud of you, and I believe in you.  No matter what the future holds, I know how hard you will have worked to make it there.  And I love you, I'm proud of you, and I believe in you.

On your graduation day if I say to you, "Are you happy, Lily?" and you respond "I happy, daddy" then I'm happy too.  And if you can't tell me that, then I will do everything in my power to fix that.

I love you Lily.
I'm proud of you.
I believe in you.
Do what makes you happy.