Showing posts with label child development. Show all posts
Showing posts with label child development. Show all posts

Monday, July 22, 2013

Telling stories


"Tell me a story about yourself, Mommy, tell me about you, Varda," Jacob asks at dinner the other night.

And although he only listens to the first three words of my answer before he's on to his next question, it's a start.

A big start.

He's been talking a lot about family lately.

"Mom and Dad, you're my family." He says, with an intonation halfway between statement and question.

"Yes we are!" I confirm.

"And Ethan is my brother." He ads.

"That's right, Jakey."

"We're a family!" I reinforce.

"Daddy was a boy? Now he's a man? I will be a man?" (Right on all counts.)

"Daddy and Mommy get married?" (Yes we did.)

"Get married you can kiss the bride?" (smooching sound effect included) (Yes, we did.)

"I will grow up and be a man and get married." (Dear God I hope so)

"Yes, Jakey."

And now, lately: "Mommy I'm going to marry you!"

And while I smile and explain that I'm already married to someone - Daddy - and he will have to find his own special person to marry when he grows up, I'm secretly glad he's said it while we're home. When he makes statements like this when we're out and about, I can see people doing a double take.

Unless Jake's been especially flappy or grimacey, they probably haven't expected him to be anything out of the ordinary, "passing" as it were, until the oddness of our conversation begins to become evident.

Also I'm mentally ticking off that box in my mind on the page of developmental milestones: Oedipal age - check!

In a "typically developing" boy that comes on about age four, and I seem to recall Ethan having similar romantic notions about me 'round about that time. And it also fits with where Jacob is in a lot of other ways, "socially/emotionally," as they say.

I kind of forgot how completely exhausting four year-olds can be...  the thousand questions, the need for constant attention, the wanting to do complicated things themselves, and then the tantrums when it doesn't work out as planned.

That all this four-year-oldness comes wrapped in the body of a 120 pound, 5 foot tall, near eleven year-old makes it all the more unsettling for strangers to witness. Though of course that's just normal for our family, things being other than they would appear to be at quick glance.

"Blue Bear needs his family to go to bed with him!" Jake firmly asserts at bedtime tonight. And so I round up the white, turquoise and sky blue bears that we have long ago designated to be his mother, father and brother (although sometimes it's a sister, depending on Jake's mood), tuck them in beside him, sing them all to sleep.

"Mommy, sleep with me!" says Jake. And though I know I can't stay, that my presence will be too exciting, will keep him awake, I lie beside him for a few minutes as he recounts his day to me, telling the stories as he remembers them:

"Mommy and Jacob went to the movies and saw Turbo. We saw the credits and the music and it was 20th Century Fox."

"And Jake and mommy went to the grocery store and bought three things." (More like 20, but who's counting.)

"And then I laughed too much and said the stupid bad words and Mommy got cross. I caused confusion and delay. Mommy is going to fire me."

"No Jakey sweetie, you needed to calm down because it was bedtime, and I'm not cross, not mad, you are NOT a bad engine, just a bouncy one. And you can't be fired."

I stroke his head, drop another kiss upon it. "And even when I do get mad, Jakey? I never, ever stop loving you, not even for an instant."

"Know this: I will always be your mom, you will always be my son, and I will always love you, forever and ever. Nothing can ever change that."

And we lie quietly for a moment.

One moment's silence.

And then I kiss him again and ease my way out of the room.

"Goodnight, Mother" he lofts at my back as I slip away.

"Goodnight Jake, I'll see you in the morning."

And I will.

Monday, December 5, 2011

Memories Captured and Captioned

Galit, over at These Little Waves is running a linkup in conjunction with Alison at Mama Wants This, called “Memories Captured” and I found out about it when I went to visit my friend Deborah over at MaNNaHaTTaMaMMa. Ain't the internet grand?

So I thought I'd participate with this gem, a blast from the boys' past:

Photo: April 2004, Jacob & Ethan at 20 months. Not talking yet, so below is my interpretation of their expressions in this photo that PERFECTLY captures their personalities for the first two years or so of their lives.

Jacob: "Hey buddy, how-ah-ya? Nice ta meetcha!"
Ethan: "Who, may I ask, are YOU? Why have you presented yourself? And what can you do for me?"

Also? The hand in the photo, holding Jacob's hand at the far left is my mother's. She was very much in their lives when they were little, the kind of Grandma who, in spite of being in her 80s with creaky arthritic knees never hesitated for a moment before getting down on the floor to play with them or going for a walk to the playground, like this day.

I love looking at this photo as a reminder of that more innocent time before we knew about Jacob's autism, when we just thought the boys had speech delays.

In those early years, Jacob actually had the more outgoing personality. He was a giant flirt. Back in the day, we thought his lack of "stranger fear" - which Ethan had in spades - just meant Jake was uber-friendly. Little did we know it meant he wasn't processing that there might be anything to be afraid of, part of his autism constellation.

A short time after this photo, when Ethan had a language explosion and Jake didn't, their personalities switched and Ethan began to reach out much farther into the world than Jacob, who was getting more spacey and "dreamy" (as his rather stupid first speech therapist called him).

Ethan went on to make friends, many friends, while Jacob has really yet to make a one. So it's nice to look back on this time when Jake seemed to be so socially connected. When "connected" meant smiling and laughing and batting his long eyelashes at pretty girls. Because THAT? He is still good at, my beautiful boy.


So, come join in and link up your own photo with Alison or Galit.
 


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Tuesday, July 26, 2011

Coming Along

Jacob’s speech is shifting again, he’s moving ahead, coming along… swimmingly.  The pace is fairly glacial, and so like the encroaching ice it moves so slowly you don’t notice it has crossed the line, carried on to elsewhere until, suddenly seeming, it is there!

Jake used to ask everyone questions that he already knew the answers to: "Is that a baby?" while staring at a baby. Contrary to the standard “book” on autistic people, Jake actually found it easier to ask a (straightforward, factual) question than to make a declarative statement.

Well, that seems to be shifting now, and Jake is just declaring away to any and all around him. Thankfully most of the people he talks to are willing to play along, not delve too deep into why a big kid is sounding so much like a little kid.

There is no meanness. Yet. But, then again, he hasn't tried talking to too many teenagers. Yet.

Jake to a man walking a dog the other day on the street: “Excuse me, Man? You’re walking your dog!” Luckily the man smiled quizzically then kindly, and agreed that yes indeed, he WAS walking his dog.

When we took a train ride recently, on the return trip home the train was very crowded and it took a long time for the conductor to make her way through the car. Jake was leaning out into the aisle watching her, clearly impatient to talk to her.

He started to shout out to her, but I made him wait until she was close. When she was two rows away from us, he just couldn't contain himself any longer...

Jacob: "Mrs. Conductor!"

Conductor: "Yes?"

(I couldn't wait to hear what in the world he was dying to say to her; really had no clue.)

Jacob: "I have a ticket!"

Conductor: "And I'm going to come punch the heck out of your ticket in just one moment. Wait and I'll be right there."

When she comes to take his ticket, Jake is beaming, then makes a request: "Make a happy face, please." (The conductor on the outgoing train had done that, pleasing Jake no end.)

Conductor: "Okay..."

And then? Jake kicks it up a notch: "With teeth, a happy face with pointy teeth!" (I'm thinking: no more vampire movies for you, my son.)

The conductor, bless her soul, is game: "Well, I'll try..."

And she did. And Jake was pleased. It doesn't look much like a vampire happy face, but she get's an A for effort and kindness, for sure.

The other day I was listening to Jacob tell me something when it hit me like a ton of bricks: He was using complete sentences without prompting.

A year ago, while he was certainly capable of using complete sentences, we mostly got single words and short phrases (if it wasn't a completely scripted phrase) unless we pushed for more. And so we had to push, push, push him. And deny him, pretend to not understand. If he could get what he wanted with two or three words, that's all we'd get.

Instead of "I want to want to wear the red shirt today, Mom, can I have it please?" (now) he would say "Red one." We had to pull expansiveness out of him, and it was exhausting.

So when did that change? I couldn't tell you. When did this full-sentence-talking-boy emerge? Dunno.

That night I asked my husband: "Have you noticed Jake almost always talks in full sentences these days?" And he had to stop and think about it, and then agreed with me that yes, he does, and no, he too has no idea exactly when that shifted.

And that's the maddening thing. There is no exactly. It's minutely incremental, like how sand dunes "walk" across a desert, a few inches a day. And you never notice the day-to-day movement until suddenly it's clear the landscape has altered irrevocably.

That's Jake.

He is also asserting himself in new and interesting ways...

When Ethan grabs the TV clicker as he sits down in the living room where Jake is in the middle of watching a show, Jake will now pipe up with: "Ethan, don't change the channel... I'm watching something!" 

When I spoke to him the other day and addressed him, as I often do, as "sweetheart" I got this response:  “Don’t call me sweetheart. My name is Jacob.” (This is probably an adaptation of a script from a TV show, book or movie that I just don't recognize, but it's so damn appropriate that I'm going to count it as amazing anyway.)

I don't know where all this is going, but I know it's a long way from where we've been. And for this next year,  I'm vowing to pay more attention on the way,

But I'll probably still be taken by surprise by Jake's changes. He's a sneaky one, that boy, growing and growing up, changing and evolving while I'm distracted and focused elsewhere for a moment.

I look at him and he's standing in place, admiring the flowers. I turn around and there he is, a whole square further down the path, smiling and waving.

And as long as he's forging ahead, I wouldn't have it any other way. Keep going Jake, keep going... leave me in the dust, please.


I'm also linking this post up to Shell's Pour Your Heart Out linky at Things I Can't Say



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Friday, July 1, 2011

Signs and Portents

I was cleaning up the living room today - don't snigger people, I do DO that (about twice a year or so) - trying to organize all the boys' papers from this past school year, when I came upon some wonderful drawings of Jacob's and a note sent home by his teachers that I want to share.

Here they are:

I asked Jake what this was. His answer: "I have veggie chips in my brain, Mom." They seem to be making him very happy in a serenely content sort of way. Works for me. Who needs brain cells when you can have yummy veggie chips filling up your head instead?

Jake wasn't able to tell me exactly who (or what) the figure in the middle of this somewhat disturbing image was. Though he did make it clear that he/it is a "bad guy" being tied up in a bathtub.  The significance of the numbers 56 & 48 in the circle on the lower left edge? Unknown. 

Ethan thinks it might be Jake's interpretation of a character from the Dragonball Z Kai TV show. I think it looks like an evil sunflower creature with a black hole in the middle of his head. The "X" marks on his face *might* be indicating that he is dead.

We will probably never know. Some of life's mysteries should remain just that, I suppose.


I have mentioned before my son's love of movies in general and Rango in specific. That his teachers "get" this and know exactly how to encourage & reward his hard work and good behavior (praise and a pic of a favorite character)? Thrills me to no end.

It was a wonderful school year for Jake, and so far three days into Summer Academy ("School Camp") he is happy as a clam - and they haven't even started swimming yet!

I feel that his fairy godparents must have been looking out for Jacob (FINALLY!) when we tumbled into this school, late last year at the very wee end of the placement process. It hadn't even been on my radar for the past few years (though I had toured it when Jake was a turning-5 tot and I was looking at SN Kindergartens).

And now, blink, blink, and it's been a whole year passed. And the school is a perfect fit for Jake. And I love each and every teacher, therapist, aide and administrator there, significantly more than words can tell.

Jacob's imaginative play and storytelling abilities are really growing by leaps and bounds right now. And while it seems to have just sprung out of the ether, I know it had to have been growing slowly, underground, like taproots for a long time before the wonderful comes bursting through into the sunshine.

Looking at these pictures from the late winter, I shouldn't be surprised at what's going on this summer. There is so much "story" in them. They really are signs of an active and engaged imagination. Portents of good things to come.

Now when Jacob takes my hand and asks "Can I tell you a story, Mom?" and then begins "Once upon a time..." I know it has grown from a happy Jakey with his head full of veggie chips.

Can't wait to see what pops out of his wonderful (and deliciously crunchy) brain next.



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Thursday, March 10, 2011

I'm over at Hopeful Parents today

It's the 10th of the month... and that means it's time to come over to:


My post there today: On Being Verbal

As anyone reading my blog recently knows, March is being a hard month for me.

I'm glad I got my post done.

I'm not feeling terribly garrulous this morning, so I think I'll just let my post, there, speak for itself.

Go, read.  See you back here soon.

And?

Thank you.  Your support means the world to me.



Monday, February 28, 2011

I Get Around

I am guest posting over at Mommypants today!

What?  You thought I meant that in a different vein?  Well, I *did* once, but not anymore.  I'm a proper married lady now, remember.  Ahem.

So come visit my friend Cheryl's terrific blog, and read all about how I wear my Mommypants.

Especially the upgrades I needed as my son's special needs were emerging, and no one was listening to me...


Cheryl was one of my early blogging connections.  She wrote for the (now sadly defunct) SV Moms Group Orange County Moms blog, a sister site to the NYC Moms Blog I wrote for.  I was noodling around their other sites, discovered Cheryl there, followed her back to her home blog and was hooked. 

Cheryl is a wonderful writer and a great mom, with three astonishingly beautiful children.  She was a pioneer, a sportswriter in a time when women were still a novelty in the locker room.

She also a truly generous blogger, creating connections and community both at Mommypants and at The Red Dress Club.

Cheryl is one of the founders of, and a driving force behind the wonderful Red Dress Club site.


This is a support site for writers, a virtual writer's society.  They have recently begun a specifically memoir writing prompt, and I was very pleased with the post my participation in this inspired.

So now go, read me at Mommypants today, and then stay for a while and savor Cheryl, explore some other mommypants moments guest posts.

I am honored to be in such prestigious company, proudly wearing my Mommypants along with the amazing guest bloggers who have come before me.

And if you are new to The Squashed Bologna, come over from Cheryl?  Welcome!

I love to meet new people, make new friends.  Sit down, stay awhile, I have some stories to tell...




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Thursday, January 20, 2011

O is for Oxygen

O is for Oxygen

Because?

Oh, why the hell not?

It is the most abundant element in our world's crust, makes up about 20% of the earth's atmosphere, is the useful part of the air we breathe, suffusing our very cells, the source of their energy.

But do we ever think much about it?  No, it's just there, all around us. Unless of course, it's not. And then, well, we're in trouble, unless that gets fixed, and fast.

Kind of like language. Being human, we use it all the time, every day.  We think in it, but don't think about it much.  Unless, of course, it's not working; not developing right from the start or slipping away, disappearing, suddenly due to trauma or slowly at the end of life

And then?  There is trouble.

I was an early talker, precocious, creating my first poem at two: "Mom, it's the moon in the afternoon!"  And my kids?  I expected them to be just like me.  Silly how first time parents are about that stuff, no?

When the boys weren't talking at a year I was frustrated, but everyone told me to chill my jets, that my expectations were unrealistic.  I was reminded that they were boys, they were twins, both reasons they would be a little later in their talking.

At fifteen months, I knew something was wrong, but once again, everyone pretty much patted me on the head and told me not to worry, all still well within the norm.

This was just a scant few years ago, before autism and speech delay were firmly embedded in the national psyche.  Before every pediatrician had a five point checklist of developmental milestones to go over at check-ups with big red flags for autism clearly spelled out.  When they were still things being whispered about in the dark corners of mommy and me classes.

When I asked for a referral to Early Intervention at a year, I was scorned; when I asked at fifteen months, I was dismissed again.  At eighteen months with neither Ethan nor Jake able to claim a stitch of functional language to their names, I finally got the go ahead to pull the parachute cord, stop my sons' developmental free-fall.

And the funny thing?  In spite of both having no language?  It was for completely different reasons.

Jacob had no language, but he did have occasional words,  You would say a word to him and he would repeat it, clear as a bell, right back to you, but then it would disappear, never to be heard again.  There were all the mechanics of speech in place but no communicative intent. And without that?  Speech does not become language.

Ethan, on the other hand, had a ton of communicative intent, but was having trouble with the mechanics of speech, wrapping his mouth around the words.  And boy, was he frustrated.  His tantrums at a year and a half, engendered by the frustration of being unable to let his thoughts be known?  Awe inspiring.  And heartbreaking.

We taught him a few signs and he worked them furiously, useful ones like "more" and "enough."  He took to the speech therapy offered by Early Intervention like a duck to water, slowly learned how to talk to us.

By two Ethan had a few words, but they were not easy to understand.  He had initial consonants only, and then it was all vowel soup.  I had to translate, was the only one who knew that “coh-ee” was a crayon, while “coo-ee” was a cookie. 

And then?  At two and a half, nearly on the dot, he had a language explosion and we never looked back.  Ethan is now a "high verbal" kid; a conversationalist with a huge, sometimes surprising vocabulary.

Jacob, on the other hand, was clearly another story.  It was slow going. We figured out there was a lot more than speech delay going on there.  Eventually he got a diagnosis, and the therapies he needed, including ABA, to begin his march up the language ladder.  It was a struggle.  I had to put on my autism-mom-cast-iron-underwear, my mommypants, and scrap, scrape and fight to get all of his necessary services and therapy hours.

There is too much story here to tell in this one post, but this small part I will...

Most people don't realize that speech and language are not the same thing, that words can be used to label and to communicate, and that one will not necessarily evolve into the other, unless a vital connection is made. That spark that is communicative intent.

At nearly two and a half Jacob had words, could label like a champ.  Show him a cup, he said "cup," turn on the faucet and he quickly came up with "water."  But when thirsty?  Jacob would just cry and cry.

Because the switch had not yet been thrown in his brain; the one that let him know that these fun labeling things, these words?  They had a purpose; could be used to communicate his thoughts, his needs, and most importantly, to get those needs met.

And then, the switch got tripped.

The day Jacob made his first request, I think it was "Up?" when he wanted to be picked up, was one of the happiest days of my life.

I think I had been holding my breath, at that point, for nearly two years.  And finally, that day, I was able to exhale, inhale again.  Bring some fresh oxygen, that stuff of life, into my brain; know that Jake would, could, eventually, enter the world of language, and be alright.



This post has been inspired by and linked up to Jenny Matlock's Alphabe-Thursday writing meme. And isn't "O" such a lovely round letter this week?

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Sunday, October 10, 2010

Looking back, looking forward, being Hopeful

Well, it's the 10th of the month, so once again you can find me here:



My post for Hopeful Parents today is: Six years and counting

I reflect on it having been six years since the October when Jacob received his first diagnosis on the Autism spectrum. 

I was devastated. 

And mightily pissed off at the people who could have told me sooner but didn't, and thus wasted his time for six important early months. 

So go, read!

See you back here tomorrow.


(Also, maybe, if you feel like it, you might want to vote for me by clicking on that annoyingly flashing "Top Mommy Blogs" button on my right hand sidebar.  Truly silly stuff, but if I make it into the top 25 it will bring me more readers.)

Sunday, September 26, 2010

Twinkle, Twinkle, Little Poopyhead

Anyone who says autistic kids have no sense of humor has clearly never met my son, Jacob.  That’s the danger in making generalizations about autism. As the old saying goes: if you've met one kid with autism... you’ve met one kid with autism.  

Jacob right now is in an awkward phase of wanting to relate all the time but having no sense whatever for what are appropriate and inappropriate ways to connect. He has no innate inner compass  to guide him, and taking lessons from his often highly inappropriate twin brother Ethan is, shall we say, problematic.  

A while back Ethan taught Jake to say "poopy-head" which is why when Ethan comes to me complaining that Jacob is sing-songing the phrase "Ethan is a poopy-head, we like you very muuuch" over and over, I tell him: "You're not getting much sympathy from me on this one, kid. You taught him that lovely term, so it's you own damn fault."  

And no, I don't actually say "damn" to my kid. I just think it very loudly. 

And then I tell Jake to stop it, that it's not OK to tease, that that is NOT a nice word to use.  So "poopy-head" goes underground for a while, but you never know when it's going to surface again.

Last night Jake got to bed late, even later than usual for a non-school night. We listened to the radio during his bath because Jacob has a great love of music and seems to not mind his mother's off-key crooning along.  There may have been some dancing mixed in with the drying off and the donning of the PJs, for, you see, great songs just kept on coming on every time I was about to turn it off. 

And I know it's hard to go from dancing right to bed, but when his eyes light up and he enjoins me with a "Dance with me Mommy, pleeeeease?" how can I resist?

How can I resist engaging in joy with my son, for whom so much of his day is lessons, lessons, lessons, and directives. Jacob hears all day long: "do this, do that, don't do that, stop, STOP!, for heaven's sake don't do THAT."  

So I said "Yes" and we danced away, bouncing, wriggling, stomping and wailing. "Stop in the name of love, before you break my heart..."

And then of course, a glance at the clock and: BED, NOW!  

Jacob has, historically, always been my easier son to put to bed. He climbs up into his top bunk, blue-bear is located and securely crooked underarm, we sing our two requisite songs; I tell him about the day that has been in the form of a story ("once upon a time there was a boy named Jacob...") and then let him know what's coming up ("And what's tomorrow, Mommy?") a kiss and he's gone. 

"Goodnight Mommy, tomorrow's another day."  

But lately his spunk has been rising, and the compliant, perhaps too compliant little boy is falling back a bit as Mr. Sass is starting to feel his oats.  And I know this is all for the good, that typical eight-year-olds are not nearly as sweet and obedient as Jacob has been, that he is veering toward normal as his feisty gently rears up.   

A large part of me is grateful, cheering him on even, while another part (the one that is already short on sleep) is groaning, bitching and moaning.  I know that for Jacob to grow into his own, the ways in which he is pliant and "easy" will have to fall by the wayside for a while.  I even wrote a post about how happy I was that he learned to "cuss" when frustrated.

But the teenage years?  I don't even want to think about that yet, though they loom, they loom.

So now, at bedtime, instead of meekly marching into his room when Mom says "Bed, Jake", I'm getting the "No", the "I hate bedtime", the "I don't want to go!"  

And then last night, in spite of being in the giggliest of moods, post dance-marathon, he starts sweetly singing our first bedtime song as he climbs up into his bunk, seemingly without too much protest.

"Twinkle, twinkle..."

"Oh, good" I think "relatively easy, tonight"

"little..."

I'm already planning  my rapid escape.

...poopy-head!"  Raucous laughter ensues.

My son is da bomb. 

 

Monday, September 6, 2010

Hold the Cheese


This photograph of my son Jacob on summer vacation is the first lovely, natural photo of him smiling that has been taken in some time. I treasure it, and it will surely grace my computer screen and wallet for some time to come.  

For you see, Jacob is on the autism spectrum, and his interpretation of what to do when a camera is pointed at him, like so much about him, is aimed at, but quite clearly missing the mark for normal, like this:


He tries too hard. Waaaay too hard. So he ends up with a strange wide eyed or squinty grimace, yelling "Cheeeese!" at the top of his lungs, to boot. 

Jake used to have a warm, natural smile,


 then he started getting spacey in photos, 

 
and now this,


the balls-to-the-walls all out attempt at normalcy that looks like lunacy in it's current manifestation.  And I am glad I know (on most days, when I am having perspective) that's what this is, just the current station stop on the long haul from here to there. 

Right now Jake is so much better nearly every day in every way, and I feel awful, an ungrateful wretch for complaining about him. I feel guilty, very guilty at not feeling grateful every minute of every day for what a gift Jacob is, and how far he has come. But on that path from here to there, where Jacob is right NOW makes him so much harder to be around than back in the bad old days, when he was spacey and happy to live in his own little world.  

Because right now, Jacob, unlike so many other of his autistic brethren wants to interact ALL THE TIME. But he is still so inept at it, is still deep into the steep uphill climb on his learning curve, that an hour with Jake is more work than an hour at the gym, with the volume turned up to eleven. Because to have a meaningful conversation with Jake, you still have to carry 90% of the load. 

Jacob’s thoughts and intentions, his imagination and his humor are so much more sophisticated, so ahead of his language capabilities, there is constant correcting and interpreting to do. And then there is the answering over and over and over again of the thousand questions.

Remember three year-olds? That's Jake right now.  But he's a 75 pound, 4 foot 6 inch three year-old who will reach up to your face and try to make your mouth talk to him if you dare try ignoring him for a moment. And Ethan, Jacob's twin brother?  Really hates and resents having a three year-old for a twin.

There are parents with non-verbal kids who would give their right arms to have the problems we are having right now, I know that.  Believe me, I know that and try to remind myself of it every day when he is truly driving me around the bend. 

Because this year, due to the vagaries of the calendar and NYS in its infinite wisdom interpreting a 12 month program to equal a mere 6 weeks of summer school, Jacob has had a month, a full month of no school, no camp, no schedule, all-mom-all-the-time.  For a month, August 13th to September 13th, he has been, is, will continue to be mine, all mine.  And Jacob?  Right now?  WILL. NOT. SHUT. UP.  Really.

And that old mainstay of lazy parenting, television?  No go, there. Watching TV is not a quiet, passive activity for Jake, it is an invitation to engage in non-stop commentary and inquiry about what he sees on the screen: 

"Is that a baby?… it's a baby!.. What's his name?... What's the baby doing, Mommy?... is he sleeping?... the baby is sleeping...  SNOOOOORE (loud snorting snoring sounds here)... the baby is sleeping, mommy, he's sleeping... (laughing hysterically now)… WAKE UP, BABY!" (shouted loud enough to wake the upstairs neighbors probably sleeping-no-longer baby.)

I love my son, love him to pieces.  He is full of joy and light and love. He is the happiest autistic person I know.  He will skip down the sidewalk, because really, why walk when you can skip?  He slips his hand into mine, gazes into my eyes and kisses me ten times in a row, just because he can. He melts my heart on an hourly basis. 

But he also asks me every five minutes, all day long, every day, if we can ride the subway train to McDonalds and ToysRUs today.  Because we did it once, at the start of break, and he so loves Times Square.

Like a toddler, he doesn't know how to take no for an answer.  Actually, Jake doesn't even know how to take yes for an answer, so impatient is he in his anticipations that he will keep asking if he can do something I have agreed to, until he is in the middle of doing it. And then three minutes after it is over, he will ask to do it again.

He will grow, he will learn, he will be able to hold a thought in his head without giving it (loud) voice.  But right now this is where we are, neither here nor there, visiting station after station on our ride together.   

Next week Jacob will go back to school.  Next week my home will be much quieter, cleaner, and I will be able to get things done. Next week I will miss him all day long.  Because, you know, I do love cheese.

 

Friday, August 27, 2010

Cruel to be Kind

The past few days have found me alone in a big house in the Berkshires with my two eight year old boys. There is a lovely pool out back, a big TV with a thousand channels of cable in the den, and not much else in the way of entertainment. 

And I have a pair of twins who, due to the nature of Autism's intrusion in family dynamics, have tremendous trouble playing together in even the best of circumstances. The few families we know who are sometimes here are now not, and did I mention that after a thoroughly hot sunny summer here in the northeast its been rainy and/or unusually cool since we got here?  

So yes, we have more time on our hands than is usual, and while in many ways the mildest word I would use for that is "challenging", in some other ways it's good. Useful even.  Because there's a bunch of stuff that Jacob needs to learn to do on his own, that he has suckered me into doing for him for years, and to turn that stuff around we need time, something of precious little abundance in our regular life.

In our hurly burly life back home when there are schedules to keep, busses to catch, and two kids to get out the door to two different destinations every morning, I often choose expediency over fostering self reliance. 

I know it's wrong, but if making Jake put on his own shoes means missing the school bus, I'll slap them on his feet. It's not that he can't do it, it's just that it can take up to 5 minutes, when I can do it in 30 seconds.  And I have to stand next to him the whole time, doing nothing else while it's going on, which means lunch is not being packed. 

Some days I have the time, some days he's fast and amazing, and some days I grab the shoes out of his hands and do it for him (wince.)

We normally live in New York City, Manhattan even, so car culture is not our culture. But here to go anywhere, do anything, it's in the car, out of the car, in the car, out of the car. 

So I've decided this is the perfect time to stop doing Jacob's seat belt buckling, and make him learn to do it himself.  

Jake has stealth helpless down to a science.  He will beg "help me, please, I can't do it Mommy" about things he is, actually, perfectly capable of doing. 

But they take effort, they take concentration, and they take more time if he does them himself, MUCH more time, so he is quite happy to have me do them for him.  Happy to have me do, and much annoyed and hurt when I don't. And that's where the cruel part comes in.

Even though he gets mad at me, even though I know it hurts his feelings as I sit next to him and watch him struggle with his socks, even though it feels cruel to hold back and watch his frustration grow as he fails and flails at tasks, it is actually the larger kindness to do so.

When I do FOR my son, I rob him of his chance for growth, competence and maturity. And that seeming kindness is the true cruelty. The fact that he doesn't understand why I refuse to be helpful mommy, why I seem callous and indifferent to his suffering makes it so much the harder.  

And while I say he's wily about these things, that's not really all of it. I can see he feels bad when he's not being so dexterous, about how long it can take him to get things right. When he feels like he's failing, he's genuinely distressed.

His self esteem is fragile and struggling over a task of self care Ethan easily handles makes him feel bad about himself... which makes me feel even more cruel when I insist he go through it. But through is the only way to the other side, to competency and success.  

I make sure to be upbeat and encouraging throughout it all. I tell him over and over that he needs to learn to do things himself, that he CAN do them and that it doesn't matter how many tries it takes before he gets it right.  I tell him I am helping when I coach him, that I will talk him through every little step, demonstrate it; but the hands, the muscles, the physical effort have to be his.

And even though he doesn't get it today, still looks at me like a scolded puppy when I make him bumble through, I hope in the future he will look back on these times and know that it was as painful for me as for him. That it took every fiber of resistance in my being, every time I was able to not jump in and rescue my miserable, frustrated son. 

Today I found the fortitude to squat beside him, while he sat in the car, next to him but not leaning in; to recite, to demonstrate, over and over, how to pull the belt across, remind him to tuck it under the booster arm:

"Use two hands, two hands, two hands, like this (hand over hand), look at the buckle, yes look at it, pay attention Jake, hold the catch steady, two hands, Jake, yes, you can do it, you can.

Jake look at me, look into my eyes, I believe in you Jake, I'm your Mom and I know you can do this.

OK now look back at the buckle, line it up, push, do it, push harder, push harder, no, look at what you're doing, line it up before you push, yes like that, two hands Jake, yes, listen for the snap... did it snap? 

YES, you did it, you did it, Jake, all by yourself! I'm so proud of you, my big boy." 

Tomorrow's goal: getting it under 5 minutes.

(And guess what? He DID IT!)

Wednesday, June 2, 2010

Victorian Gardens Magic

NOTE: This post originally appeared on the sadly closed NYC Moms Blog.

This Saturday I ignored dire predictions of afternoon thunderstorms and took the boys off to that tiny jewel of an amusement park that wings in to perch in Central Park’s Wollman Rink for the summer  (Memorial Day through mid September): Victorian Gardens.  We’ve been taking the boys there a few times a summer since they were three, and though they are nearly too old, too big for the pint sized thrills therein to be found, we’re squeezing one, maybe two more summers out of the place, because there’s some sort of magic there for the boys and I’m not ready to let it go yet.

I remember the first time we went, it was the whole family, all four of us: me, my husband, and the boys.  They were still tiny, not yet quite three, and we rode all the rides with them, grown ups with our bent knees approaching our ears. They loved being on the really little kiddie rides, which were just right sized droplets of thrill for them.  By the next summer, at four, our services were only required for some, not all rides (just the "really scary" ones), and my husband and I stood by in trepidation as Ethan took charge of his twin brother Jacob, making sure he stayed safety belted and didn’t try to climb out mid-ride.  For you see, Jacob is on the Autism Spectrum, and at four was still very un-awake to the rules of the world, needed a minder at all times.

This was my husband’s last foray with us there, however, because while they may be named “Gardens”, it’s mostly a misnomer.  But really, who would come to “Victorian Hottest-shadeless-circular-patch-of-sun-blasted-cement-in-the-city”?  Oh, yeah, it’s surrounded by Central Park lush, but inside: bake-a-rama.  And my husband, well, he melts in the heat. Hates heat. His idea of perfect weather: Seattle. In winter.  So we no longer torture him by making him come drip with us. Because no matter what the forecast, and this Saturday it was “cloudy and cooler with a strong chance of thunderstorms”, it’s ALWAYS hot and humid when we go.  The kids don’t care and I just sweat and bear it because they always have such a wonderful time.  But the whirling fun, while terrific, isn’t the magic, it’s the co-operation. Because you see, my boys don’t always get along, and lately it’s been like oil and water.  And that’s on the calm days.  On the bloody ones, it’s more like oil and flame thrower.  The full history is too long and complicated to go into here, but let’s just say that having a twin on the autism spectrum is really hard.  And being the autistic twin of a brother you love, who currently wants very little to do with you is really hard, too.  Yet somehow, at Victorian Gardens magic things happen.  The boys don’t fight.  They ride rides together, laughing.  Every year Jacob needs less and less help, by now just little bits, here and there, and here, at Victorian Gardens, Ethan is willing to provide it, patiently.  It’s actually something approaching a miracle.  

Thinking about writing this post in praise of our little magic patch of amusement, I stumbled upon something I had written last summer about this very phenomenon. Here it is: 

I am absurdly happy watching my sons be happy today on the flying swings.  Ethan does not hate his brother today.  When I go in to help Jacob onto the apparatus, Ethan shoos me away saying “I can help him, I want to help him, I can do it” so I back off, let him be the big, helpful brother to his twin.  Something I never envisioned 7 years ago when, large as an overripe fruit, I lay about waiting to bust open and birth the twins.  An only child’s fervent fantasy: my children will never know loneliness, they will always have each other.  They will not spend countless childhood hours in front of the mirror practicing funny faces, creating a playmate, an other, out of the reflected self.  I never counted on Autism, on this: that Ethan and Jacob are and are not twins.  Womb shared, room sharing they are.  But partners and age mates not now, not yet, questionably ever, though I’ll never say never.

I still tell the story, though it would horrify him now, of Ethan and I in the car when he was 4.  We had dropped off Jake and I was driving the 10 blocks to Ethan’s pre-school.  He was in the back seat, when he said “Mom, I wish that Jake and I both had had Autism or we both didn’t have Autism.” Tears jump out of my eyes “Why honey?” “So we could be the same and go to the same school.”  Glad he’s facing the back of my head so he doesn’t catch the tears streaming down my face now.  So understanding and compassionate at 4.  Jump ahead 3 years to the fighting, hitting, screaming “I hate you” – where is that sweet boy?  Buried under years of longing and disappointment turned bitter and angry.  Bitter and angry at 7 – how did it come to this?  Too big a burden to be a twin but older brother, yet I ask him to shoulder that load every day.  


And so it continues this year: we have a day of (mostly) peace and fun, stay out till late, watch the first fireflies come out in Central Park as the boys scramble up and down rock "mountains" on the long walk home. And I quietly hold my breath, waiting for what tomorrow will bring.

Monday, May 31, 2010

From Autist to Artist

I have, on occasion, sat in the park chatting with a stranger and felt compelled to reveal: “my son is Autistic” and had them mishear me. “Oh, my son / brother / nephew is very artistic, too, isn’t that wonderful?” and I don’t know what to say.  I hate to pop their happy bubble, am glad they have thought my son typical enough to pass for just an oddball artist and not a totally weird special needs kid. Odd behavior is, after all, accepted from artists.  And the greater the talent or fame (not necessarily the same thing) the more leeway is given, the more deflection from normalcy is tolerated.

And then sometimes, I think: “can he be both?” and “what’s the difference anyway, and where is the path across that great divide?”

Quite a few years ago, when Jacob was just three and a half, I was looking for a good special ed pre-school for him, and had brought him in to the Child Development Center (CDC) for his interview/playdate at their therapeutic nursery school.  It had not gone well, and they rejected him for their program for not having enough “social interest” in the other kids.

Oh, if they could see him now, he won’t leave other children alone, pestering them to play with him, to answer his repetitious and often tangential questions.  Jacob is a seething cauldron full of social desire currently mis-matched with a thimbleful of social skills. When he wants to engage another child and can’t think of what to say, Jake will go up to him and purposefully belch in his face in and then laugh.  It would completely delight him if somebody, someday would just burp him back.

But back to the CDC playdate gone bad.  It was one of those rare early spring days winking a big hint of summery heat to come.  I had not known how long we would be out, and had canceled the rest of Jacob’s appointments for the day.  At the time his days were full of various therapies, all the time, all day long.  Jake had a schedule that had to kept on the computer, adjusted and printed up weekly, posted on the wall and distributed to all, so he could make every appointment.  40+ hours a week of ABA, Speech, OT, PT, Counseling, SEIT: Jacob had, and was, a full time job.  But this day was cleared, free, a total rarity. A gift.  And I decided to revel in it. 

The CDC was on 57th Street, right by the southern edge of Central Park, so there we headed. Crossing 59th Street we encountered the many horse drawn carriages that tourists engage to whirl through the park and I thought “what the hell”, told Jacob to pick a horse.  Our driver wore a worn thin “St. Paddy’s Day Pub Crawl” t-shirt instead of the fine coachman livery of some others, but he seemed pleasant to Jake so we climbed aboard.  I knew money was tight, as ever, and I certainly could have found a “more appropriate” way to spend 35 dollars, but I wanted to indulge Jake for once in a regular kid special thing.  This wasn’t therapy, it was fun, and he, we, needed it.

After a long slow pleasant clopping meander through the southern reaches of Central Park, we were left off on the East side, and I decided to just wander together through the park vaguely West, since that was the direction home.

We are walking slowly, no agenda, no hurry, through the lower edge of the park, when we skirt by the Wollman Rink which is currently neither beast nor fowl, post skating season, but not yet transformed into the Victorian Gardens amusement park (which I recently wrote about in this post for the NYC Moms blog).  Work is being done and there are some single bricks laying about, castoffs from some project or other nearby. Jacob sees one and picks it up.  I don’t see the harm, so I let him.

It becomes his favorite toy, his new best friend.  He carries it throughout the park, won’t let me take it back from him.  And then he puts it down on the edge of the path, half on the pavement, half on the grass, and flings himself down to lie flat, gaze at the brick up close and view the world around him through the lens of: brick foreground, Central Park splendors behind.  He picks the brick up, carries it a few feet to a new vista and repeats.

And I am struck by how engaged in this project he is.  He is seeing the world through this unique filter and he is so enthralled by it.  And it bowls me over, how intense is his love affair with this seeming ordinary workaday object: a brick.  How basic, solid, utilitarian, we see them every day with nary a second glance, and yet to him it has become a thing of beauty, special and precious. 

And then I think: Isn’t this what artists do? Take things we pass by, think nothing of and hold them up, say “look at the wonderfulness here, the splendor you didn’t notice”.  It’s what my father did as a photographer, made you look at that man working on the street, that lovely junk on a junk man’s table, debris discarded on a city street, and see the extraordinary beauty there in the ordinary.

I think of the Dadaists, who specifically chose pedestrian objects and held them up claiming “it’s art if I say it is”; Duchamp’s urinal the most widely recognized example of this oft scorned and vilified movement -- but we still remember and talk about it, it’s influence carrying on thorough the generations, giving birth to new art forms and bad music videos alike.

And I wonder: what is the wall, the membrane, the line in the sand that represents the magic threshold that Jake would have to step over to cross from Autist to Artist? Because if this intense attachment to everyday objects, having a unique vision of them, even carrying that over to obsession, if this all is a hallmark of the Autistic and the Artist alike, what separates them? 

I think of many artists becoming obsessed with a particular image or object; story or subject and painting, sculpting, re-creating that over and over in different ways, repetition with variation but still, holding onto the thing until its meaning has been wrung out, exhausted, and still going back to that well again: Monet's water lilies, Frida Kahlo's self portraits, Rothko’s rectangles.

When an autistic kid re-creates the same thing over and over we call it rigidity and try to break him of it, but when a great artist paints the same thing over and over, we call that her signature subject and marvel at her ability to see things new again whilst stumping along a worn and familiar path.

It is interesting to note that the very first of Marcel Duchamp’s found object creations (which he called "Readymades") was a bicycle wheel, which he mounted upside down onto a stool in his studio. He would spin it occasionally just to watch it, claiming "I enjoyed looking at it, just as I enjoy looking at the flames dancing in the fireplace." Hmm, sound like anyone else we know?

And the answer is, of course, communicative intent.  For an Artist, no mater how narcissistic, wrapped up in himself, withdrawn and solitary, the creative impulse is still connected to communication, the desire to share one’s uniquely warped vision of the world with the world, or at least one other individual in it. The Autist, on the other hand, is most usually happy to lose himself in the objects of his fascination, to commune rapturously alone with their beauty. 

The interesting thing is that Jacob has changed so much in this, now.  He is straddling that fence that separates the autist from the artist, he has bucketfuls of communicative intent. Were this to have happened today he would not want to be alone with his lovely brick but he would be taking me by the hand, dragging me down to belly up to the pavement with him, close one eye then the other to see how the brick relates to the background.  “Look, Mommy!” he would say, as he does so often now, pointing out his world to me, wanting me to see and marvel with him at what has caught his fancy.  That “with him” part is the big brass ring, and I am over the moon that Jacob now has it firmly in his grasp. 

It’s called “shared attention”, and if your child is developing typically you don’t even notice it as it kicks in around 9 months, certainly by a year.  You point to a bird and your baby cues in to your gaze, his eyes follow the direction of your finger and he looks where you’re looking, smiles when he finds the birdie.  Your toddler picks up a pretty rock and brings it to you, proudly sharing her treasure.

Jacob did none of these things at that tender age. But he’s here now, sharing attention in spades, and I bow down to kiss the feet of the goddess of neuro-emotional development that has allowed Jacob to walk this path, step by step, from Autist toward Artist.



Photo Credit: Jim Steinhardt  "Girl with Balloon at Central Park Zoo" 1963
(yes, that's me)

Tuesday, April 27, 2010

The “S” word is Stupid!

NOTE: This post originally appeared on the sadly closed NYC Moms Blog.

It’s really funny, but when you have a kid with special needs like I do, behaviors that would be questionable from your typical kids become things of joy when your autistic kid does them.  Case in point:

This afternoon, my 7 year old son Jacob was in the living room with his wonderful 1 on 1 therapist Becca, who comes three afternoons a week to push, push, push his envelope. They were playing with Mr. Potato Head, working on those pesky prepositions that give Jacob such trouble. 

When you’ve got language processing issues, the more abstract a concept, the harder it is to really wrap your brain around.  Prepositions are all relational, while other attributes are absolute.  Jacob has no problems with absolutes.  You see, the blue shoe is always blue, but “on top of”, “next to”, that can change on a dime. 

Becca’s trying to get Jacob to ask specifically for the parts he needs, and he’s doing a great:  “I want the 2 white hands that are in front of the green hat.” Jakey is rockin’ it!  Mr. Potato Head is being assembled, and I am so happy listening in on them from the room next door.

Then, Jake is having trouble pushing a piece into place – “This is so stupid!” he shouts in frustration.  WOW!!!!  

Now, in our house, “Stupid” is the “S” word (thank goodness they don’t know the other one yet) and is quite frowned upon.  If Ethan were to use it to describe another person, especially his twin brother Jacob, he would be reminded how not OK that is. 

But in this case, I am so, so proud of Jacob for expressing his frustration just like a “typical kid” instead of growling or hitting himself on the head, as he has done in the past, that I want to run into the living room and kiss him.  I want to swoop him up and dance a jig of joy because my son has said “stupid” and meant it.  

My son Jacob has learned to cuss, yea!!!

Next up on the agenda: learning to lie.

Tuesday, March 9, 2010

What’s the word?

My father has lost his words.  They have fallen out of his brain, all meaning sifted out.  Left is the dross, the building blocks of words stripped of their meanings, sounds, almost words: Ginnnggg, wishta washtra waaah, burnfurgr shtupf, gaaaaaaah!.  My father sounds like a gibbering demented old man because he is a gibbering demented old man.

And it’s the truly, fully, saddest thing in the world to watch my once intellectual, eloquent, full of ten dollar words father unable to tell us that he is in pain.  We have to look for the signs: his body tense and guarded, shifting around on the bed un-restful, his eyes weepy, his voice burred, the tone of his proto-words pleading. Then, yesterday, finally able to dredge around in his mind to find one true word: “Help!”

And yes, now it’s a lot like caring for a pre-verbal infant.  A while ago, after my father’s first big collapse, on December 17th, 2007 our family’s personal day of infamy, when he fell apart in my apartment, unable to breathe, drowning in heart failure, and 911 came in the nick of time, he had a rather awful hospitalization.

This was the day of my parents move back to Manhattan from the wilds of Riverdale.  Six blocks from my house, so I could keep a closer eye on them, so they could have a grocery store and diner and drug store mere feet from their front door, no longer confined to manicured grounds, dependent upon the whims of occasional aides and cabdrivers or the available time of their daughter to venture into the world. 

What I had not calculated was that the ambulance would feel it necessary to bring my father to the closest hospital where he had no connections.  All my father’s doctors at that time were still up North, but I was told that even though the EMTs had stabilized him with lasix and nitro, time was of the essence. 

If I had had a moment to think things through I would have pointed out that Mt. Sinai was really just as close, as the trip through Central Park is such a quick one, but I was clearly not thinking clearly, in the rush of my first brush with “oh, my God my Dad just almost died”.

And while they might have decent cardiac care in the ER, the ward my father was put into was just terrible.  Since he was stable, he did not go into the ICU, and because of his age, he was placed on a geriatric unit, where the nurses really didn’t give two shits and didn’t want to be bothered with an angry old man in pain.

So when the narcotic pain killers they gave him caused him terrible constipation and they just didn’t care, when they handed me a pair of gloves and told me they wouldn’t be able to get around to removing his impacted stool until some time tomorrow but I could have a go at it if I wished, what could I do but dig in.

This was my first bout with cringe inducing, dignity stripping physical care of my father and it was a doozy.  My big revelation after that was that while cleaning the poop off your baby’s bottom is a loving act full of joy and promise, cleaning the poop out of your father’s bottom is a loving act full of sorrow and pain.

So my father is in a post-verbal state, which is like and so unlike my children when they were pre-verbal; situationally parallel, but oh so emotionally disparate.  You always remember your developing child’s first words, but what about your deteriorating parent’s last?   How can you know that you’ve heard it, and that there truly are    no             more             words                           to                                            come?

When Jacob was a little babe, he had all the earmarks of becoming a language learner: he cooed, he babbled, he goo-gooed on time, he could and would mimic words with perfect diction. One time he reached up to grab my hand while I was changing him; “Careful” I said and he repeated it back to me, clear as a bell.  But then it didn’t happen, he froze there, he wasn’t talking.

As he got older and the specificity of his issues were becoming apparent, I realized how un-hooked speech is from language.  Language in all its human-making glory, requires communicative intent and Jacob had absolutely none. 

As time went on he could label like a champ. Hold up a cup he said "cup", show him a running faucet and he said "water', but when he was thirsty he would just cry and cry.  The parts of his brain that needed to engage to know that these wordy things could be used to communicate his needs, his wants, his feelings; those connections just hadn’t been made yet.  The first time Jake made a request, found words to be of use and not just a neat parlor trick for labeling stuff, I cried and cried in relief.

Ask anyone what makes us human, what separates us from our animal cousins, and one of the first things they’ll say is language, the ability to communicate thoughts and feelings.  As we learn more about animal communication and how they sometimes can do even that, the distinction is often further refined, drawing the human line at the concepts of abstraction and self reflection, our ability to ponder and pronounce upon the parameters of our existence.  All this, my son Jacob eventually gained, and my father has now lost. 

However, this is all such a simplification, since my father, though stripped of his ability to communicate through words, though un-moored in time and space, is still quite thoroughly human.  Those of us who have known and loved him when he was still who he was, can still see the Jim in him.

This is why we have struggled so hard to keep him home, with support from caregivers who knew him when.  If we were to put him in a nursing home, all they would see, all they would know is the gibbering demented old man he has become, and it is much harder to give loving care when that’s all there is.

My sister Lois, who works in the field of elder care, has said that Dad is not ready to die yet, because he is still processing something, even though we can’t know exactly what.  We have to trust that he’s there in his brain somewhere, doing just that, the final work of his life, getting ready to go. 

I also think of all the non-verbal Autistic children, communicating through their behaviors, communing with the infinitesimal and the infinite that we, too busy, often overlook.  These children whose loving parents know how fully human they are, who hold unknown universes inside themselves, are so often treated so shabbily by the world, cast off because they have no words to trade. 

I think how thin the line is between Jacob and his non-verbal brethren; I think about the time before words, when we did not know if they would ever come, if he would ever understand us, or live “self directed” for the rest of his life.

It’s called the autism spectrum because it stretches so far across many sometime divides, and connects us all.  As parents of children on the spectrum our hearts stretch, too, take us to places we never imagined, never needed to imagine in the time before.

And so I go about my daily life. I pick Ethan up at school, try to look like I understand as he proudly shares his latest Pokemon conquests.  I gently correct Jacob yet again when he calls the female cat “he”.  I hold my father’s hand as he mumbles and raves.

I sit down to write about it all, using words like tiny lifesavers, keeping myself afloat, here in the choppy waters of my little pond, my wavelength of the spectrum, my slice of life.