Our journey in the Autism Spectrum

[Ed. note:  I originally wrote this piece in 2011. Four years ago! Now it’s 2015 and  today I saw a post by the wonderful and amazing John Elder Robison sharing information on a new book coming out by Steve Silberman called NeuroTribes: The Legacy of Autism and the Future of Neurodiversity. I felt it necessary to revisit this post (with minor edits) to hopefully get people thinking!] 

There are so many things I wish, hope and dream for my son; so many things for each of my kids, which includes not only Henry but his two “typical” sisters. Of course, I wish for them to be happy, productive, good citizens. I feel that is a given. So, aside from that, what do I really wish for them?  Henry in particular? I wish for them to be accepted for who they are, as they are.

This is not to say that I don’t want programs and therapies specifically to help my son. I do! As many as possible with a lot of options and opportunities.  This is also not to say that I want or expect the world to accommodate my son’s differences completely. He needs to learn outside his comfort zone too. This is how we grow. There would be room for research, of course, for those looking for new therapies, for a cause, for a “cure”.

What I am looking for is a world that will accept him, understand him, and still want to know him, to like him, to value what he contributes to the world. All of that despite that he doesn’t think the same as others. He sees the world differently.

How can we accomplish this? Where to begin? Education. Education. Education. Education for teachers. Education for our kids’ peers! And with this education comes mentoring for our kids. All kids! How awesome would it be if ALL teachers were special education teachers?!?! Wouldn’t ALL of our kids benefit from that? I know my littlest “typical” girl does! She was a model student in an integrated special education preschool class. It was a wonderful experience. We all learn differently. How amazing and different our world would be if we ALL had a special mentor growing up! This, ideally, needs to start EARLY.

I would love to see my son in an environment where sometimes when he feels he must make strange space noises or talk to himself, those around him, his peers, will be okay with it. They would understand and not think anything of it. He would have opportunities to walk away from a group project or game when it simply becomes too much to interact or be close with others and be welcomed back when he is ready to continue contributing to the group. A place where everyone feels comfortable and everyone’s differences are accepted.

This subject is so important, so vast. We have much work still to do. But perhaps, for those who run across this blog, it will get them thinking and sharing and collaborating. Perhaps someday we will no longer have to put the word typical in quotes when referring to some of our kids. No more “NT” kids. All of us would be considered ND. Neurodiverse. The new “typical”.

…where ridiculous resides and because I always seem to take the long way around a story:

My little dude is funny. Except, after BDC taking him shopping for new sneakers tonight, and finding that his feet are quickly reaching my size (he’s only 8!), he’s not truly” little”. Though I will probably refer to him as my “little dude” for the rest of his life. (So, Henry, you have been warned.) But I digress.

Later in the evening I walked upstairs to corral the little (see, I can’t help myself) chameleons to bed while BDC worked on getting pictures off of my phone and into my computer. Because sometimes I’m technically challenged.  Anyway, it’s a cool evening so the windows are open and our attic fan is running. When I got to our bedroom (because the kids have claimed it as their own and are watching TV in there)  I smelled something strangely odorous.  Like perhaps there was a dead animal nearby in our neighborhood, or more accurately, right outside our bedroom window.

The following conversation ensued.

ME: *scrunching my nose*  “What smells in here?”

Of course, I try to identify it and find the source.  I go over to our window to see if it’s stronger there. You know, sort of like, “Oh this milk is sour! Taste it!” Only in this case I was inflicting this upon my own olfactory senses.  Again, I digress.

As I am unable to discern where said smell is coming from, I turn back to the kids.

HENRY: “Heh, heh!”  *said devilishly*  “That must be me you smell.”

ME: “YOU smell?”   *then I realize I can’t remember the last time Henry had a bath*

HENRY: “Yeah, come smell me.”

* again with the sour milk…?  I move hesitantly toward him.*

HENRY: “Dad and I were trying some man cologne while we were at Kohl’s.”

ME: “Oh!”  *laughing*  “Did you really?”

HENRY: “Only two kinds. Smell.”  *he pulls his t-shirt away from his neck so I can get a good sniff*

ME:  “Hey, that smells pretty good!”  *said with a bit of surprise*  “That’s not what I was smelling a second ago.”

HENRY: “Ohhhh, yeahhhh!”  *nodding his head, giving me the smooth-move-finger-gun motion and an attempt at a wink*  “Dad should get two bottles of each and I should get two bottles of each for four bottles and I should wear this twice a day.”

Well, on the upside, I wouldn’t smell that dead animal smell with Henry bathing in two different types of cologne twice a day.  Although, we  probably would all end up not being able to smell anything after that, rendering any kind of scent a moot point.  (I did mention the long way around, right? Keep reading. It’s almost the end. Really.)

By this time I’m getting the kids tucked in their beds and of course, Lucy has chimed in on the conversation.

LUCY: ” Henry, you can’t wear that!”

HENRY: “I might wear it THREE times a day!  Maybe even FOUR! Ok, maybe just two. I can SO wear it, Lucy.”

LUCY: *laughing*  “Ewwww! No you can’t Henry!  You can’t even date yet.”

HENRY: *matter-of-factly*  “Well, that is true.”

ME: “You don’t have to date to wear good smells. Remember, Henry, you used to wear Mad Hatter? And you really liked that.”

HENRY: “Well, yeah.  I should probably wear man cologne more often. You know, because a man likes to smell good.”

*shaking my head. Good gods, how did I land on this planet and with these kids?!? *

So, there you have it. Because honestly I don’t know how to end this ridiculous story about an equally ridiculous conversation. But it made me so happy to see my kids laughing and being utterly serious and silly at the same time.  For me, that’s reason enough to take the long way to cologne.

Riding Shotgun

[ alternatively titled: the Rabinowitz Bubble Revisited]

Today is officially our first full day of summer break.  I haven’t written much over the last several months.  Well, let’s be honest.  I haven’t blogged at all.  I’ve really missed writing here but for me to write something down it takes time, quiet, and a lot of emotional and mental energy; none of which I’ve had much of this past school year.  At least regarding autism.

I’ve also had trouble coming up with something to write about.  All-in-all it’s been a pretty “typical” year for the Rabinowitz tribe.  Yes, autism still lives with us.   Autism has challenged us.   And, in the moments when I’ve watched Henry try to connect with some of his peers or not be able to do an activity because of bugs, autism has also broken my heart.  But that’s normal for us; the way things just…are.  I’ve written before about what I call The Rabinowitz Bubble.  That’s where I’ve been living this past school year.

We’ve had great successes and we’ve had challenges.  More often than not, I’ve shared small snippets of these on my Facebook page.  And that’s been enough for me.  In our family bubble I don’t feel the need to go into every minute detail of our lives and what living with autism is like for us.  It just IS.  When I think about it, that’s the big part of my not blogging these last many months.  Because really, “typical” is rather “boring” isn’t it.

I’ve enjoyed being “boring”.  As many, many (too many, really) of you know, autism is often a daily, 24/7/365, in-your-face, way of life.  This past school year I’ve been able to scoot it aside, for the most part, and let it sit next to me.  It’s refreshing.  I’ve been able to concentrate more on building a business. (Yeah, that’s a shameless plug. Deal with it.)  I’ve also worked on my fiction, both reading it and writing my own.  I’ve been able to become more involved in Molly’s high school band.  Although, that’s a bit insane of me.  I’ll admit I’m not sure what I was thinking on that one!  And even more crazy for me is, as of 6 weeks ago, I began running.  Well, technically “wogging” (walking/jogging) but still, Runkeeper calls it running.  So, “running” it is because it makes me feel better about the whole madness of it.  I’ve actually been able to go a few hours without thinking about autism at all!  Seriously.  I can hardly believe it myself!  I think I must be learning to compartmentalize it better.

All of this gives me hope that perhaps, some day, autism will take a backseat in our lives.  Yeah, I’m sure at times it will be one of those annoying backseat drivers and even occasionally jump back up into the driver’s seat.  That’s okay.  That’s what it IS.  For now, this summer, I’ll be content to let autism ride shotgun.

 

For whatever reason, though it’s something anxiety related I’m guessing (which deserves a much longer post), as soon as Henry puts on his jacket to wait (inside) for the morning bus he stops talking.  Every morning he asks earlier and earlier if he can put on his jacket.  This morning this is how this conversation played out.

HENRY: Can I put on my jacket now?

ME: *glancing at the clock* You’ve still got 15 minutes until the bus comes.  If you can continue talking with us when appropriate then you can put on your jacket.

HENRY: But I can’t.  It’s a ….thing.

*his new catch-all phrase for whatever he decides he is compelled to do.*

ME: No. It’s not ‘a thing’. You have words. Use them.

LUCY: But not the bad ones, Henry.

…and there you go.

It’s been months and months since I’ve blogged.  The more time that has passed I’ve felt more and more pressure to write something.  Anything.  But what to write about?  I’ve just not been feelin’ it. As we all know, April is autism awareness/acceptance month so, as my first post since September, I thought I’d do something a little different.

In case you are new to my Facebook page and/or blog, I love chameleons.  I relate to their changing colors and camouflage; their ability to  always change and blend in (or not blend in). For me they also represent the diversity in everyone and their spectrum of many colors relates very well to the Autism Spectrum. It’s a whole big jumble of layers of  awesome symbolism! 

Anyway, getting to the point, I thought it would be fun to have my readers and fans share their own diversity; their “chameleon-ness” as it were.  Below is a link for a PDF file that can be printed out and colored. I’m encouraging anyone and EVERYONE to color their chameleons in a way that best expresses themselves.  This is for kids and adults! Anyone! Whether you are on the Spectrum or not!!!

I would love it, if you are so inclined, to take a picture of you and/or your little chameleon(s) and share your creations! I will be accepting pictures all this month of April. You can share them on my Facebook page, A Chameleon in the Spectrum or via my e-mail at inthespectrum@hotmail.com .

Your photos can be of just your completed chameleon coloring page or with the face of the artist as well.  No names or pictures will be used unless permission is given. I thank you in advance for your participation.

This April 2014 let’s all express,celebrate and share our diversity!!!

CLICK THIS LINK TO PRINT YOUR CHAMELEON:  Chameleon Coloring Page

There is Always Recourse

Recourse:   a source of help in a difficult situation  syn. option, possibility, alternative, resort, way out, hope, remedy.

There have been so many incredible blogs posting about the horrible tragedy of Kelli and Issy that I’m not even going to pretend that I can write anything that hasn’t already been written and certainly I could never share as eloquently as those bloggers that I have read today.   But there is a lump in my throat that is just not going away tonight.

Another horrific story of an autism mom who broke.  Who was so broken she felt there was no other solution.  She had tried. She WAS TRYING to get her autistic daughter the help she needed and the education that she deserved.  This mama was trying to keep her family safe.  She was advocating for her daughter.  And what completely blew me away is that she has been WRITING about her journey!  She is a BLOGGER!  One of “us”.  A mom blogger sharing about her autistic child and their family…the good, the bad, and the ugly.

Like me.  Like so many of us out there.

And she was tired.  So very tired.  Now she and her daughter are lying in hospital beds after a failed murder/suicide attempt.  I can not comprehend this.

We read each others blogs.

We share and comment.

We, for the most part, are supportive of each other.

We reach out to each other.

We reach out to help.

We reach out to be heard.

We reach out to know we are not alone.

I cannot comprehend what Kelli was going through.  I can not begin to imagine feeling so desperate, so tired, so…broken, that she felt this was her only choice.  I cannot understand it nor can I condone it.  But I also will not judge her.  My heart is aching tonight.  Not for Kelli’s actions, but for her, for Issy , for their family, and for the path that lead Kelli to make the choice that she did.

For those of you who may be reading this, please know that  there is always recourse.  There MUST be!  We need to ensure it!  We must do everything and anything to find that source of help, whether for ourselves or for someone else.  Keep reaching out!  This is what we must do.  THIS is our recourse.

The Third Time Is the Claw

Last weekend BDC took the kids to a birthday party at one of those arcade game places that serves pizza. No, not the one with that cheesy mouse character.  No, this particular venue I like to refer to as “the mouse on steroids”.  Everything is bigger, “better” and more-of.  There is laser tag, bumper cars  and go-karts in addition to a crap-load of video arcade games; all under one roof.  There is an all-you-can-eat buffet, salad bar and dessert bar.  As a potential selling point for the parents, there are several themed dining areas separate from the gaming area where the adults can hide enjoy a fairly tasty meal.  I highly recommend the giant cinnamon rolls.  But I digress.

So, in this super-sized world of multi-sensory stimulation, the first thing that draws my kiddos’ attention (after the go-karts & bumper cars) is the giant claw machine.  In my experience as a mother of three darling children, these machines are nothing but heartache and are the money-pits of all arcade games.  For $3 you get one chance to pluck out  a prize with a claw that barely has any actual grasping capabilities.  (I’m being generous with my use of “barely”.)  At least with the other games there is a pretty good chance for them to win a few tickets that can be accumulated to trade in at the prize counter for a piece of gum.  But this giant claw machine has piles of BIG toys.  Real prizes.  All just heaped up in a tower of treasures enclosed in a crystal clear glass box perfect for the picking.  And the heavens open to shine down the brightest of lights on these gems.

Of course your kid wants the one and only, awesome, giant, super-shiny,-blingy-bling thing inside that prize bin.  They want it bad.  They HAVE to have it.  They are CERTAIN, beyond any shadow of a doubt, that with their super-power claw skills, they can surely win that prize and it will forever be held in highest regard of all the crappy treasured arcade game prizes.  After several tries accompanied by multiple outbursts, a flood of tears and their college tuition, they MIGHT finally grab a .25 cent stuffed something-or-other.   (That new X-Box they wanted for their birthday but didn’t get because it was too expensive now looks like a bargain.)   Hence why BDC and I usually bribe (because it’s just cheaper) encourage the kids to forego the claw.  Although, I admit there have been times when our patience has been tried as thin as tissue paper and we, ourselves, are sensory overloaded, that we’ve been known to cave acquiesce. That being said, we have the condition of  “three tries only”.

This recent birthday party, with BDC running solo with the two little ones, was one of those times.  $3. Nothing.  Another $3.  Nothing.  Okay.  This is it.  “This is your last try Henry.”  $3.  Henry positions the claw.  Runs to one side to eye-ball the logistics.  Then to the other side.  “Henry you have 12 seconds to try to make a grab.”  More assessment.  Then he releases the claw which grabs a most coveted prize and moves toward the shoot, prize dangling precariously.  And then drops.  Into the shoot!  Hoots of glorious joy!  Henry won  a giant, nubby, yellow ball, the most appropriate of prizes for my little dude on the spectrum!  Which, by the way, to date, is being held in the highest regard of all arcade game prizes!

My proud boy sits upon his treasure!

My proud boy sits upon his treasure!

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