New Book Announcement = Same Child, Different Day: Five Years Louder

Any long-time readers know that in May, 2007, our son Nolan was diagnosed with autism.  While we were hit by the diagnosis nearly as hard as any other family, like many of those families, we did our best to avoid letting it get us down.  We weren't running into a lot of help or direction, and ended up learning as much as we could on our own.

One year later, almost to the day, I sat down to write a book about our experiences during that first year.  I shared the haircuts, the doctor visits, comments made by uninformed medical professionals, Lori’s tutu-clad walk through the mall, and many other fun, sarcastic, teachable moments.  While I thought I would end up filling volumes, the work ended up being not much more than booklet-length.  It was so small, I didn't even think to take that 50-page venture to a publisher; instead, the first 100 copies were born on an office color printer.  Later, with a generous donation from a local autism support group, the next 300 came from a local printing company.

With no ISBN, no agent, and no publisher, I was on my own to market Same Child, Different Day: One family’s experiences during the first year after a child’s autism diagnosis.  I promoted the book as a look at the lighter side of autism; while the diagnosis can surely be a traumatic moment, I tried to show that there are times when you “just gotta laugh.”  I held a few local signings, and appeared at an autism awareness event or two.  After being interviewed a couple times on the radio, folks seemed to be taking to the little tome.  To spark further interest and to reach a wider market, I created this blog with the same title.

The Internet exposure caught the attention of Autism Speaks, and they began additionally offering the booklet from their website. With that, I was able to reach an even larger audience.  Soon, Same Child, Different Day reached nearly every corner of the world: New Zealand, South Africa, Canada, the United States and Turkey all blessed me with requests for the booklet.  I wholeheartedly believe that, along with frank and funny anecdotes, it is the early naivete of that first publication that ended up making it so appealing.

I realized after unwrapping 2013 that it has been five years since I told the world about that innocent little booklet.  Anne Barbano, one of the radio interviewers I mentioned, encouraged that she and I should chat again when I write a Book 2.

That time is now.

Today I officially announce that I have begun working on the follow up to that first Same Child, Different Day.  Based on what we have experienced so far, our advocacy and awareness efforts, goals our son has surpassed that we were told he would never even reach, the later autism diagnosis for Nolan’s older sister, and many other interesting encounters, the second book will be entitled Same Child, Different Day: Five Years Louder (5YL).

Even though the finished product is still months away, I would love it if you would help to spread the word and get people excited for the arrival of 5YL.  I’ll be sure to fill this full-length book with more of the poignant, funny, thought-provoking and entertaining stories and useful information you found in the first Same Child, Different Day.  Please tell anyone and everyone you know that this fun book showing the lighter side of autism is coming.

Feel free to visit the book's website by clicking here.  Also, PLEASE ask anyone who would be interested to LIKE our Facebook page by clicking here (click here)!

To reach me directly, please use my contact page.

Ten Things You Would Overhear Every Day in Our House

Anyone reading this post has stories to tell about the goings on in their unique household.  I’m sure you have even said things that, to a neighbor listening in, would sound as though you were drained of all coherent thought.  In this post, I want to share with you a list of ten things we say in our own home that, while not all necessarily quirky, we should at some time record for easier playback.

Though I agree that there are likely a households out there that repeat one or two of these phrases daily, in our House of Chaos, there isn't a saying below that doesn't go unsaid every day.  Ten of the most popular are, in no particular order..

1)  “NO PASSWORD”:  Each and every mother loving day, Nolan insists on connecting with one manner or other of electronic device.  We try not to connect him with anything that can display a movie, mostly because of numbers 2 and 3 (and in part #4) below.  Because we lock the devices, part of that objection requires us to repeatedly utter “No Password,” to which we are met with screams, repeated volleys requesting the secret code, crying, high decibel whines and whatever ruckus he thinks will annoy us into giving in.  If we do, we are guaranteed to holler…

2)  “NO PAUSE/PLAY”:  This should actually read “No Pause, Play, Stop, Fast forward, Rewind, Eject, Reinsert, Freeze frame, Zoom”, but I wouldn't have time to type all that (especially since we only say this statement every day).  Like I said in #1, we try to keep the remotes, Wii controllers, computer and iPad passwords, smart phones and other DVD/Netflix access points away from Nolan.  If we slack (daily) and he gets a hold (daily) of one of the aforementioned forbidden items, he will resort to pressing any combination of the electronic commands listed above. To do so is to feed caffeinated cane sugar directly into the vessels of his sensory diet.  That leads to us yelling…

3)  “STOP BOUNCING”:  As do many kids with autism, Nolan stims.  Repetitive movie quotes, humming in a way that mimics the Tasmanian Devil, and the “typical” hand flapping are all daily self-stimulation activities we have come to know and love.  But, every time we cue the intro to Spongebob Squarepants or Yo, Gabba Gabba (or any other sherbet-colored children’s television show), our +100lb. boy starts rocking the joint --- and I don’t mean by being musically inclined.  When he starts bouncing, the living room sways, the TV that (if I do say so myself) is securely mounted to the wall begins to jiggle, and you can ride the surf of the hardwood floor boards the length of the house.  Then, it isn't long before we yell…

4)  “TURN IT DOWN”: This may be the least fair of all the items on this list, because --- let’s be honest --- what parent doesn't at one time or another crave peace and quiet?  In this case, though, we’re talking about both Madison and Nolan, and redundancy.  It’s every day, several times a day, that we utter this statement.  Whether it’s the iPad, Netflix or that robot we bought for Christmas, the device unfailingly manages to reach a decibel level somewhere between “chainsaw” and “fighter jet squadron”.  Ask the user to “turn it down”, and they will --- but only until they think we can no longer hear it.  Then, the child will kindly return the volume to its previous ear-bursting level, most likely so we don’t miss out on all the fun ourselves.  Of course, while this is going on with one child, to the other, one of will have to say…

5) “STOP WHISTLING”:  Guess what Madison has learned how to do.  All the time.  Ask her to stop whistling, however, and she will reach an indignant posture that is reserved for the most arrogant diva.  We may have asked her to stop whistling because its suppertime, Mom is sleeping or she has been at it for eleven hours.  Regardless, all she heard was that she would never again be allowed to whistle for the rest of her life.  She sulks, we get upset, she has to go to bed, then we have to say...

6)  “STOP KISSING THE MIRROR”:  There’s a nice, full-length mirror hanging on the hallway side of our bathroom door.  Though she’s no sort of “clean freak”, Lori is wiping that thing daily.  It would appear that neither Nolan nor Madison is intimidated by nor suffers from heightened hypersensitivity caused by this shiny, reflective decoration.  On the contrary; each one --- eight and nine respectively, mind you --- cannot resist placing a full-on lip smack every time they head through the bathroom door.  Not long after this, we will have to tell Nolan…

7)  “YOUR UNDERWEAR IS ON BACKWARDS”: One might think that this phrase is reserved for me.  Rest assured, I usually get this one right the first time without too much instructional assistance.  Poor Nolan does this so often, though, that (well, first off, it made this list; and second) I’m beginning to wonder if at this point in time he thinks that’s just how they go on.  No matter; it isn't long before we have to beg…

8) “NO MOMMY’S BED”: This one has only been nightly for about three months.  A year before that, it lasted a little over a year and a half.  I mentioned previously how Nolan demands nightly and repeatedly that he wants to sleep in our Lori’s bed.  It isn't a quiet request and it won’t arbitrarily happen.  Oh no.  Even on the off chance he falls asleep in his own bed, by between 12:30 and 3:30 in the morning, Nolan will end up in our bed.  We no longer try to fight him on it, either.  Not if we want the rest of the house to get any kind of sleep.  And, at that time in the morning, I just want to get to my sofa.  Then, in the morning, there is no doubt Lori will have to say…

9)  “WAIT FOR IT”:  We really should put that Angel Guard seat belt latch cover back on the buckle.  This nifty device keeps Nolan (any child, for that matter) from unbuckling the belt.  Otherwise, every day as soon as the van slows to Docking Speed, we hear the dreadful ‘click’, and he is standing up.  Lori started saying “wait for it” as she would travel the loop in front of Nolan’s school on the way to dropping him off.  If she drawls out a slow “waaaaaait for it,” the boy will at least stay buckled in --- even though he may think she’s playing a game.  It works in parking lots, driveways and fast food drive-thrus…go ahead, try it at home.  While you are doing so, I’ll explain that we constantly have to tell Nolan…

10)  “GET YOUR HAND OUT OF YOUR PANTS”:  Again, this one amazingly is rarely directed toward me.  And, once again, Nolan and his underclothes made the list.  This one happens so frequently that he can recite it back to us on command.  One afternoon I had to stay after work for a meeting; Nolan was allowed to hang out.  Lori left him with his iPad, and I had him situated in our meeting room on a beanbag.  I turned around to check on him and, there he was, in this room full of female teachers, digging in The Valley.  All I was able to say was, “Nolan...”  As if we had rehearsed it (and I guess in a way we had), Nolan replied, “Get your hand out of you pants.”  Oh, how they laughed...

Way to stay classy, son.

~~Jon

Unprompted and Unexpected

As I mentioned on my blog Celebrate the Autism Spectrum (click here), I get excited when any child in the World of Autism does anything beyond expectation.  It may be a one-time thing, or it could be the sign of something big on the horizon.  Doesn't matter.  To those of us who know and understand, even the littlest leaps are amazing.

Friday Nolan made one of those unexpected leaps.  His paraprofessional told my wife today that, while working with Nolan, she somehow caused her finger to bleed.  Well, Nolan noticed, and at first reacted as we figure he would.

“Are you OK, Ms. Lafayette?” he mumbled as though his mouth was full of marbles, trying so hard to speak as fast as we do.

She showed him her finger; it was bleeding a little, but she assured him she would be fine.  Undeterred, he told her, “Be right back.”

“It’s OK, Nolan.  I’m fine,” she tried to convince him again.  Opening the classroom door, however, he told her over his shoulder, “Stay here.”

Ms. Lafayette was curious at this point where the journey would take him, so she ducked into the hallway a short distance behind him.  She wanted to give him his space, while still intrigued by what he intended.

“Stay ‘dere’,” he commanded again when he saw her tailing him, and he turned the corner toward the school’s front door.  Ms. Lafayette was not worried, though she ducked through a shortcut to arrive first near where she was sure would be his destination. 

Opening the office door, Nolan struggled at first to get the school nurse to understand his desire.  “Bandage,” he stumbled.  She was confused, so he repeated, “I want bandage, 'puhweeze'.”

Upon seeing Nolan’s aide, the nurse understood.  She handed him the supplies he needed, and he headed back out the door.  Ms. Lafayette scooted back down the side hallway, hoping to meet Nolan at the other end.  As soon as they found one another, Nolan tried to open the package and put the bandage on Ms. Lafayette’s finger.

He did all of this unprompted.  All by himself.

Sniffle.

He also likes electronics.  A lot.  When it isn't time for him to use the iPad or computer or watch movies, Nolan will scour the countryside (that is, every room in the house) looking for a stray, unguarded cell phone.  Lori, Kaleigh and I recently acquired smart phones, and they are as functional as any computer.  Leave one without a lookout, and he is on Netflix or YouTube, playing, pausing and rewinding the same two or three seconds of any interesting video he can find.

Friday night I was the negligent adult, and he wore my phone out until the battery died.  I tried to get my phone from him as quickly as I could, without any luck.  By the time anyone had gotten to him, Nolan had pulled a switcheroo; somewhere in the fuss, he had unplugged his mother’s charging phone and replaced it with mine.

Clever.

~Jon

   

Madison's First Sleepover

Even though we have two kids on the spectrum, I don’t talk much about Nolan’s older sister Madison.  Mad (she doesn't care for “Maddie”) was diagnosed with PDD-NOS 2½ years ago, and, while we had our suspicions for some time before, she wasn't diagnosed until she was 6½.  Even though she has autism, honestly, sometimes it’s easy to miss.  Mad is smart, talkative, loving, makes eye contact, does well in school and is relatively independent.

But there are a couple places where her uniqueness shines through.  First of all, she has a nearly eidetic memory, and catches details of a situation at a quick glance.  Yet, while she can recall the weather and exactly what she was wearing on the day we bought our pet mice last year, to get her to remember the morning routine she has been doing for years or focus long enough to find a bright pink piece of paper on an otherwise empty dining room table, and all hope is lost.

Then, there are Madison’s social skills.  I’ll start by saying that Mad is in love with everyone.  In her eyes, there is not an ugly person on this planet, and everyone loves her back.  Why wouldn't they?  To her, all people are perfect and she considers every soul she meets to be a friend.  From our big, gruff, bearded typical Vermont neighbor next door to my boss she met one time in the grocery store, Madison loves all people.

But, to get her to understand the complexities and nuances of childhood relationships, to realize that not everyone wants to hear about her family all the time, or to make her realize kids can have more than one friend at a time, is a full time job.  She has “friends” at school, but not by the same definition we used as kids.  Don’t get me wrong; she knows when someone is being mean to her and there are some she does not like at all.  But we accept that Mad may likely never have a BFF.

Nevertheless, Madison had her first sleepover this past weekend.  We have known “V” and her family for a couple of years now.  We invite them to game days, and we have watched each other’s kids from time to time.  V and Mad are in the same class, and she is the closest thing to a best friend that our daughter has.  V knows that Madison is quirky and can get annoyed sometimes at her chattiness.  Even though they get along well together, I was leery about the event.

That was a pointless worry.  Madison and V had a great time together.  Sure, Madison chatted V’s ears off and had a tendency to get upset at the unfairness of losing a Wii game.  But, when I caught my little kid leading the play activities and had V following her every direction without argument, my apprehension melted away.  Her friend showed up at about 4:30 Saturday, and was still in our house 24 hours later, never once begging for us to rescue her or asking for amnesty.

We worry that she’ll never have long lasting relationships with kids her age.  If the past weekend was any indication, Madison doesn't seem too worried about it.

~Jon

Rough Sleeper

Nolan doesn't know how to sleep.

"What's that?" you ask.  "Know how to sleep?  Like, he can't choose a position?"

No.  I quite literally mean exactly what I said: the boy doesn't appear to find the "natural periodic state of rest for the mind and body, in which the eyes usually close and consciousness is completely or partially lost, so that there is a decrease in bodily movement and responsiveness to external stimuli" (www.thefreedictionary.com).  I'll elaborate.

During school nights especially, we try to get Madison and Nolan to bed for 8:30 at the latest.  Sometimes we succeed with this, which is especially helpful when Lori and I are attending classes ourselves and need the time that they are zonked out to get our own work done.  More often than that, though, we aren’t even putting them in bed until about 8:30 --- and that is due to our own procrastinating.  There is a fear Lori and I share that we associate with most of the overly dramatic transition times in our house --- times that make a Lindsay Lohan temper tantrum look like a Teddy Bear picnic.

(Oh those dreaded transitions --- a time for fighting to get them off the iPad, screaming as they refuse to move down the hallway toward the bathroom, rerouting as that trip down the hallway turns into a detour into a random bedroom, our struggling to drag a limp, lifeless body back into the hallway, frustration as one child can’t resist admiring herself in the mirror, irritation as the other one can’t resist planting his lip prints on the same mirror, and concern as they both need to be retrained once again on the same procedures we retrained for the prior evening regarding teeth brushing, hand washing, potty using, medicine receiving and turn taking.)

Eventually, they make it into bed.  Stories have been read; covers have been pulled up to chins and kisses have been doled out.  Once the lights are off, we know what happens.  Every night.

“Mommy bed,” we hear, and we ignore.  “Daddy, Nolan Mommy bed?”  For now, it’s phrased as a question.

I don’t know why I always do, but I can’t continue to ignore him, and I answer every time.  “Go to sleep, Nolan.  In Nolan’s bed.”

“Mommy bed?!”  It’s a louder question this time.

“No, buddy.  Daddy’s laying in Mommy’s bed tonight.”

“Mommy bed!” he shouts again.  I ignore the request this time, and the cacophony of repetitive demands begins.

“Mommy bed.  Mommy bed!  Mommy bed!  Nolan Mommy bed!  Daddy, Nolan Mommy bed!”

And if we continue to ignore him: “MOOOOOMY BEEEEEEDDDD!” he screeches two octaves higher.

He knows the buttons to push.  “Nolan!” I tell him directly, “You are laying in Nolan’s bed, tonight!”

The debate continues for a little bit, and sometimes he even falls asleep.  Or so it seems at first.  He wasn’t always this way.  He used to insist on sleeping with one of us when he first started sleeping in a Big Bed…and we would usually give in.  Then one day, he just stopped.  He would fall asleep in his own bed and we wouldn’t hear from him until morning.  Then, about three months ago, it started up again.

The one piece that never seemed to go away, however, and happens without fail as though he’s on a timer, nearly every night at almost exactly 12:30 in the morning: Nolan screams.

It’s a scary sound, and often lasts for a half hour or longer.  Sometimes the screams are accompanied by moans, sleep talking, and other alarming, indescribable noises.  Quite often, while we assume he is sleeping, he will holler, “Mommy, no!” or “K’wee (his sister Kaleigh), stop it,” or some other random, sometimes inaudible statement, all the while maintaining the chorus of other unsettling sounds.  No one is in the room bothering him, and we have ruled out the cats sleeping too closely to him.

During this time, he also kicks, turns sideways, and rolls in his blanket like a Cheese Dog on a convenience store steam roller.  We try to calm him down by patting his back, and --- curiously --- sometimes yelling his name works.  There are nights though where no amount of consolation will work; the poor guy just will not sleep.

I guess that’s a bit of an exaggeration.  He sleeps, of course, if ever so very lightly; and not very well, or very deeply.

I’d imagine that’s why he ends up in our Mommy’s bed, anyhow.  

Special Occasions: Who's Expectation is it, Anyway?

I've mentioned before about the difficulty with holidays and special occasions where our son Nolan is concerned.  He wears the label of “classic autism”, if one can even be described as such.  There are times when he is the “stimmy”, “routine-y”, “bouncy”, “no-eye-contact” template of the definition.  Other days, he won’t stop hugging us or stop talking (granted, the “talking” is generally a constant repeat of a three-line section from a SpongeBob episode, which I guess would be back to the routine and stimming).  But, rarely does he get excited in anticipation of anything other than returning home to fire up the iPad.

His sister Madison dons a PDD-NOS diagnosis (which she will relinquish when the bright, shiny, new DSM-V hits newsstands), and on a good day would easily be mistaken for one of her neurotypical peers.  Tell her there’s a birthday coming up (hers or a friend’s), or that Santa is even weeks away, and she glows with anticipation.

When any big day is upon us, Mad is as excited as a Chihuahua is to a doorbell.  She salivates at the thought of a new doll, an art set, a picture drawn in crayon.  To her, opening gifts is an event to be savored.  And no matter what is inside, no matter how trivial it may appear to an outsider, to Madison, it is keys to Cinderella’s castle.

Nolan, on the other hand, remains stoic and resolute.  No, sir --- no silly gifts will loosen his resolve to stay glued to whichever electronic device we forgot to put away the night before.  It isn't in him to get excited about what’s inside the red, green, uninteresting paper.  Oh, he has little problem responding in one way or another to the product inside, but unlike Mad, his reaction is never what a parent expects or wishes for their child.

This Christmas wasn't much different, though it was better (for us) than holidays in the past.  He was a little more excited; slightly more animated when he opened his gifts.  It could have been the electronic nature of them, or he could have genuinely been energized.  Either way, his eyes seemed to shine a little brighter (if that could even be possible), and his smile was more genuine.

I don’t know if it really matters either way.  I mean, to us as parents, we want him to be happy, and excited, and to look forward to his birthday.  But if he doesn't get that way, is that on him, or on us?  What if he’s satisfied with whatever emotion he is feeling?  He doesn't have any idea he is missing out on anything…because, to him, he isn't.

The rest of the year, the word “normal” frustrates us to aggravation or tears, depending on the situation.  Yet, when a special event rolls around, our hearts are broken that our kiddos don’t have a “normal” reaction to the occasion.

Sometimes it isn't our kids who have the difficulty. 

~Jon

Myth: Individuals with Autism are a Danger to Society

There is a misconception --- likely fomented by the media and a susceptible public --- that children with autism spectrum disorders are somehow dangerous, or begin to exhibit dangerous behaviors, as they get older.  While this may hold true for some individuals living with autism, the same can be said for any neurotypical person.

In fact, with early and intense intervention, symptoms of children on the spectrum tend to improve rather than worsen.  While autism can never be cured, and a child certainly doesn’t grow out of it, with proper treatment, individuals can learn ways to cope with their condition.  Many, in fact, go on to lead successful, productive lives.

It is very rare to find a person with autism who is outwardly violent or who purposefully commits acts of hatred.  When someone on the spectrum is involved in aggressive incidents, they are usually instigated by frustration, sensory overload, and physical excess or similar stimuli.  Of course, as with anyone, there are exceptions to this, and other medical, mental, or behavioral factors may be evident as well.

If you’ve had other experiences or have anything you would like to add, please comment below.  I encourage thoughtful, stimulating conversation, regardless of your viewpoint.

~Jon

Same Child Different Day, Back from a Break and New Information

I’m sad that it has been 10½ months since my last post.  There was a point in time when I was able to commit day and night to this blog.  I was sharing what you wanted to hear, and you made it successful.  However, as it often does, life slid in behind the wheel and steered us down a different road.

The bad news started with losing my 9-to-5 in January, which by itself can stifle one’s enthusiasm.  However, I immediately signed up for college courses, working toward my Bachelor’s Degree in Communications, and I began looking for another job.  Along with meeting the requirements of the Department of Labor, the college courses have been research and writing intensive, so I have appropriated much of my authoring time to that.

Since then, I was also fortunate to have been invited to co-develop an autism resource center (ARCTIC: Autism Recognition Care Training and Information Center) at our local Vermont Achievement Center (VAC).  Creating the proposal, cultivation of the facility and duties as the Coordinator of Autism Resources has added to my list of chores.  I also host the blog for the autism support group (Celebrate the Autism Spectrum) at VAC, and the organization offered me a position as an Education Instruction Assistant in their school for children with autism.  So, I have been deeply immersed in self-enrichment as well as continuing advocacy and education projects.

In reality I have only taken a break from the duties of "Same Child, Different Day" for a short while.  While I’m not completely happy with that, at least I have been in front of continuing to help folks.  In the end, that’s what’s most important to me.

If you would still like to order a copy of the booklet Same Child, Different Day, or to email me personally, click here.  If you or someone you know would like to more information about our Rutland, VT area autism resource center, the school, the support group or our other blog, please click on this link.

Thanks and welcome back!

~Jon

Autism and Carly Fleischmann, in her own words (literally)

Check out the video below; this girl is amazing!

http://www.bigdandbubba.com/pages/archive2012.html?feed=447152&article=9637873

Thank you to Big D & Bubba for the link!

~Jon

Autism: A Family Affair

I don’t mention it much here; heck, I’ve gone back through my posts and don’t see that I’ve ever mentioned it once.  Nolan isn’t our only one on the spectrum.  His older sister Madison was diagnosed a little over a year ago when she was almost seven.  I don’t think to ever mention her autism for a few reasons.

First of all, she is lucky to even be alive.  She was scheduled to be born January 29, 2004 (today would be her 8^th birthday), but she couldn’t wait.  She came to us instead in November, 2003 – three months early at 27 weeks plus five days.  She was 14 inches long, and tipped the scales at a meager 2 pounds four ounces (sugar is heavier, but not nearly as sweet).  For her first two years we were fully focused on keeping her alive.

Since then, aside from some minor medical concerns and a demure size that belies her energy level, she’s progressed at a fairly steady rate.  She’s scarily intelligent and (as far as the rest of the World knows) is the happiest of all Earth’s creatures.  But, there have been things that caused us to worry about her.

She hand flaps like she’s trying to take off; she has trouble with the appropriateness of some of her conversations; Mad is friends with other kids, but gets lost when she’s pressed to understand social cues; she repeats, repeats, repeats; she can’t recall the “morning drill” on her own from day to day; she is literally distracted by shiny things (woe unto the mirror hanging on our bathroom door)…and the list goes on.

A couple years ago, we had her tested by the same folks who ran the series on Nolan.  While Mad’s level of autism barely mirrors her brother’s, we never doubted our concerns.  Not that we want even one on the spectrum, let alone two.  Nevertheless, her diagnosis has helped us out when it came time to get her some therapies she has since benefitted from.

Still, it’s tough from day to day to think that she is even autistic (or has autism or whatever you prefer to read).  But, she has been diagnosed and she is.  I don’t know why I felt the need to bring that up, other than today is January 29 and it got me thinking…

~Jon