"Same Child, Different Day" Site Closing: Where to go now

Because of the useful and relevant information it provides, "Same Child, Different Day" will stay up and available. However, I will no longer be monitoring this site. Our life has taken a different direction, and I've developed two new blogs to reflect that.

"Read All You Want" is my writing blog, and I will be using it as a writing portfolio as well. It has autism anecdotes, but now only as they pertain to my writing. Please click here to see what it has to offer.

The second blog, "Our Journey, Our Way," touches on how autism affects us as we travel through life: to restaurants, bowling alleys, arcades, beaches, parks, theme parks and any other travel experience.  Please check it out, and feel free to share and comment.

In fact, please share this post, and bring your and our friends to another look at life with autism spectrum disorders.

Thanks for your loyal support, and I look forward to traveling with you and writing for you on my other blogs.

Autism Story: One for the history books

Nolan likes swimming.  Like many others living with autism, he is drawn to the water.  So, it’s fortunate for him that his school provides pool therapy once per week.  It’s fortunate for me that the therapies are performed at the Mitchell Therapy Pool, which just happens to be located on the Vermont Achievement Center campus where I work.  Nearly every Tuesday I try to sneak down to the pool on the other side of the building to see Nolan, if even for just five minutes.

A couple weeks ago I missed visiting with him, which in itself doesn't man much; I've missed a Tuesday here or there before.  However, I found out later that I would have seen a rather amazing thing, had I visited this one particular swim session.

Ann, our very hard working pool director, is in love with each of the kids in all of our programs.  She has also become attached to the visitors to our pool, including those from outside organizations.  She makes it a point to learn about each one, including their names and a little about them.  Nolan is no exception.

One day when my own student was visiting the pool, Ann shared with me what I missed the previous Tuesday.

As I've found him in the past, Ann told me Nolan was sitting alone at the end of one of the picnic tables enjoying his snack after a usually rigorous swim session.  At the other end sat an anatomical rescue dummy, seated in an upright position, just as a kid enjoying a snack would be after a usually rigorous swim session.  As Ann thumbed through a catalog, she watched Nolan watching the mannequin; his eyes would return to his snack, then back to the dummy, and back again.

Slowly, Nolan inched closer to the mannequin, obviously curious and interested about the new addition to the table.  Ann set the magazine down on the table as she walked away to answer the phone a few feet from the picnic table.  When her attention turned back to my son, she couldn't believe what she saw.

Nolan had slid himself all the way over, and he had placed Ann’s catalog in front of the dummy; his hand was patting the back of the doll and he was turning the magazine’s pages as he repeatedly asked the inanimate object, “Are you okay, baby?”  He thought the adult-sized puppet was a baby!

She was floored by the adorable scene, and I was amazed.  When I told Lori about it later, we were both delighted that this kid, who three years ago couldn't so much as say his name, had now engaged in spontaneous play with a full-sized doll and had acknowledged its presence --- and had read it a book!

Sniffle.

~Jon

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

   

Same Child, Different Day II: Doing what I do best

Stay with me for a minute...this really is going somewhere.

You are all wonderful. Your comments on the blog Same Child, Different Day have been thoughtful and inspiring. And your remarks regarding the booklet Same Child, Different Day have been nothing but encouraging. Follow that up with the fact that there is so much more to say, and so many more people who need to hear what needs to be said. Autism is not going away in the foreseeable future, and our loved ones are everywhere.

We have had discussions regarding potty training, I've written articles about autism in public, we've ventured into the world of politics, and I never even told you about the time 1) the school forgot to put Nolan on the bus and --- 2) he was almost "expelled" (he's a special needs kindergartner) for a day (or two). All the while, I've been reaching an audience who already lives it.

That's not bad, in and of itself. However, if ever we're going to bring awareness about that which is autism, it's the "other people" I/we need to reach.

So...I've been writing a book...again.

Tentatively titled Fishing for Nolan, it's both an expansion of the booklet Same Child, Different Day, and at the same time is it is a completely new work. For one thing, Fishing, which this time will be a full-length "memoir", looks at autism from a father's perspective. As the Product Description for Breaking Autism's Barriers (Bill Davis, Jessica Kingsley Pub, Feb, 2001) denotes, "Few books about autism have been written from a father's perspective." Fishing also takes on a different tone than Not My Boy (Rodney Peete, Hyperion, Mar, 2010). While Not My Boy looks at the issue through a cause-and-effect lens, Fishing takes a more anecdotal, open-minded approach.

While we, too, have our beliefs about Nolan's diagnosis, this book is geared more toward the general reader. I've pointed this book in the direction of public awareness.

So, there you have it. Over the next few months, I will be glued to this chair in an effort to bring our story to you (and in a more ambitious way, to the rest of the World). I appreciate your continued support ... because without all of you, this never would have been possible!

Thanks, Everyone.

~Jon

Autism: A Speech Milestone

We all know that coping with speech issues can be a priority issue for most families living with autism. Getting these kids to repeat words can be a milestone, never mind having them utter a spontaneous sentence. Nolan shared some spontaneity back in September that prompted me to post this short article.

Since then his speech has been getting better, and he has been repeating a lot of things we say. He's also been doing a great job of responding to different questions we ask, and his replies have been quite appropriate. But getting him to just say a sentence is something we had yet to experience. Until today.

We wait for the bus with Nolan and his sister about a block from our house. Since its been getting colder, we've been standing by in the idling, warm Jeep. Nolan knows when we see the bus turn up School Street toward us, it's time to unbuckle and get outside. Usually, we have to ask him, "Is that the bus, Nolan?" He will of course, answer, "Yes."

Today was a shock. A big, in your face, exciting shock. As the big yellow tube headed for us, Nolan said most assuredly, "Look, I see the bus." Now, some of the words were garbled, and he dropped a few consonants, but he said it all by himself! No prompting. No questions asked. Since Mom and I were both reading, we hadn't even seen the bus for ourselves yet. This was all Nolan. And it was wonderful.

Who knows when the next sentence will happen? I don't even think I care. To me, this says that he has an excellent chance of "making it", to overuse a phrase. Whatever...we're proud of him.

Good stuff, huh?

~Jon

Florida "Teacher" Suspended for Autism Vote Reinstated

OMG! What are they thinking? Recently Wendy Portillo, a kindergarten teacher from Port St. Lucie, Florida, decided to put to a vote from her students, whether or not an autistic child should be allowed to stay in the classroom. The kids voted 14-2 against the child, and the teacher was later suspended from the classroom.

Good first step, right? Yeah, well...

...seems the school board has decided to REINSTATE this dummy and relocate her to sixth grade. Yeah, that'll help.

This stupidhead is still being allowed to teach because she has tenure, and doesn't see the error of her ways. And the school board was freaking unanimous in their decision to let her back on board. Can you believe it?

So, you have a six year old kid in your class who is disruptive of the other kids, and you ask them to vote on whether or not the child should be allowed to stay in. No parental involvement. You don't ask the school clinician. The principal isn't brought on board. You just arbitrarily ask your students to make the decision. I'm sorry but, who is this moron?

If the kid was a distraction because of his clothing, or wheelchair, or burn scars, or speech impediment, or --- God forbid --- skin color, would this teacher have committed the same moronic decision? Hard to say, since it happened once with this child. But I guess worse than her choice was the choice of the school board to --- again I say --- unanimously decide that, sure, she's a great teacher and should be allowed to traipse back into a classroom and be allowed to wield her judgemental opinions on any child that happens through the door.

All this after a judge upheld her loss of tenure! Woe unto any child who doesn't fit this anus' mold (if you can't tell, she's pissed me off). And "teacher"? What is it that she teaches her students? Intolerance? Judgement? Discrimination? Stupidity? The voting process?

Please link this story, post about it, make it known, Tweet and Retweet it...Email (you can get a list of departments by clicking here) or phone the Port St. Lucie school board (772-340-7100 by the way).

Please sound off...let me know what you think! And I'll link your stories back here if you post them, k?

Thanks for indulging me.

~Jon

Off Topic: My New Writing Blog

This is a quick post and way WAY off topic --- As some of you may know and/or realize, I like to write. At the risk of sounding like I'm patting myself on the back, I think I do a pretty darn good job, too.

For a while now, I've been posting the odd article or two on Associated Content and that has been alright. But my first true love is the short story. For a couple of months now, a fellow blogger friend has been nagging (nee, encouraging) me to post some of my works.

Sure, it's dangerous putting your creations out there for free for the world to see, but for me, that's just the point. So I've created a blog dedicated solely to my writing. It may not be Harper's Weekly or New Yorker, but it is somewhere to be seen.

So if you are interested in that sort of thing, please stop by Read All You Want and, you know, read all you want. It doesn't matter, 'cause I'll make more! Click on that link above, or here: http://jonwrites.wordpress.com/

Hope to see you there.

~Jon

Autism Spectrum Disorders: Calling all storytellers!

Phase two of the marketing test for Same Child, Different Day elicits your help once again. As many of you are aware, this family autism support resource is full of our own anecdotes and stories of how Nolan's autism has affected our family directly. But I've realized with the latest promotion that our experiences are only one small part of the story that is autism. Time and again people commented, "When I read your booklet, it was refreshing to see we aren't alone," or "I'm guilty of feeling justified that you experience the same meltdowns we do," and "Thank you for making me realize it's OK to laugh about this condition every once in a while."

You, too have experienced so much in dealing with ASD's, that I would love to hear from you, as well. And I'd love for you to share your thoughts and experiences with all of us, with the ultimate goal of telling the world what we have to say.

If you are comfortable with it, and in your "spare" time, please feel free to comment below or email me with your own "Spectrum" stories. Not as an invasion of privacy or morbid voyeurism; rather this is a chance to celebrate your loved ones and show them off in front of the world! Parents love to brag about their kids and now's your chance.

Share something funny, something frustrating, something prideful or something quirky. Did you have an awkward but amusing run-in in public? Maybe we did, too! Does your loved one living with autism have a funny trait? No need to be embarrassed or devastated by it; brag about it now! Here's your chance to tell everyone how frustrating that stim is, while at the same time admitting that you have laughed about it behind closed doors. I am not asking any of us to make fun of our loved ones --- oh goodness, no! Instead this is an opportunity to include them in mainstream life --- a chance to show off the fact that, just as they are as different as chocolate and vanilla, they are equally just like everyone else.

And if sharing your name is an awkward proposition, no worries! If you ask me to, I'll honor your request for confidentiality and anonymity. Just keep in mind that the final intent is to present your snippets in print.

I have a saying: "Doctors keep people alive, but storytellers keep CIVILIZATIONS alive." I think there's a message there somewhere. Anyhow...

...thanks a lot and Happy Storytelling.

~Jon