Our journey in the Autism Spectrum

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The Dreaded NYE Invitation and 4 Reasons We’re Going Anyway

A couple of days ago we received an invite to a New Year’s Eve party. It’s the kind of invite we always turn down. Even when it’s from close friends. First, “a couple of days” is considered “last-minute” in our world.  Spontaneity is not our friend much. Second, Henry just doesn’t cope well for long in someone else’s home unless it’s family and even then, sometimes we just never know.  This particular invitation is from the parents of one of Lucy’s school friends in the neighborhood. We’ve gotten to know them because their house is just a tad farther than I’m comfortable letting Lucy get there by herself so we run the girls back and forth in our cars. And that is about the extent of our relationship with them. Chatting for a few moments before and/or after pick-up-drop-off for a play date. Anyway, they are super nice and the party will certainly be kid-friendly. The thing is, I just know that Henry is not going to make it there long at all. It’s just going to be too much in a new place with too many people he doesn’t know. (And I think he’s going to be the only boy). That adds stress to us that many folks just don’t (and can’t) understand.

These kinds of things involve so much planning on our part. Do we go? Do we not go? Weighing of the pros and cons, steeling ourselves for the multitude of situations and the infinite variables that could cause it all to go so very wrong. Or right, for that matter. Devising and committing to memory plans A through Z for said evening. And social-storying the hell out it! At the very least, we’re mentally and emotionally drained before we even get there.

So, why would we even consider going at all? We were completely happy and comfortable with our plans to stay and home and do nothing. I was sort of relishing that idea actually!

1:  Well, because invitations from people come few and far between. Our few close friends know it’s difficult for us and for Henry in particular. We are grateful that they understand and remain our friends anyway. Those are the friends that know it’s just easier if they come over to our house. We have amazing friends! But still, it doesn’t seem right to shut out everyone all of the time.

2:  Because we’ve turned this family down on several previous occasions. (See #1) And quite frankly, Grant gets along with the other dad. Outside of his “gang” of friends from high school, there are only three other couples that we’ve gotten to know pretty well and that Grant enjoys spending time with. And even then, we don’t get to socialize with any of them very often! We need to get out of the house!

3:  Besides pushing our own comfort zone a bit, it’s important that we also have Henry give his comfort zone a nudge. It is an important aspect of helping him grow; to “expand his Kansas” so to speak. How can he practice his coping skills if he never goes anywhere that makes him have to “cope”?  I’m certainly not saying that he needs to go out and try new things, meet new people to the point of sensory overload and meltdowns! But you know, just give that space in his development a little tap on the shoulder.  It wouldn’t hurt the hubs or me for that same reason.

4:  They live close.  Proximity does matter in this autism household.  In fact, it’s a necessity in situations like this. The quote by Ally Sheedy’s character in The Breakfast Club always comes to mind, “You never know when you may have to jam.” And in revisiting both reasons #1 and #3, why not take advantage of the fact that this rare invitation came from down the street!

I get that this is all part of the autism parenting gig. We will go prepared as best we can with iPad, 3DS, etc. We have rehearsed with Henry the different options he will have for the evening and he knows that because they live close enough, he even has the option to come back home.  I am prepared not to stay very long. I’m cool with that. What exhausts me is the not knowing how things might go and the fact that even the simplest of things is ever easy or simple. I’m tired already. All of 2015 has exhausted me. But we will go. We will go for all of the reasons listed above.

And for me, one more small, secret reason. 5: Perhaps this New Year’s Eve, if we join in celebrating in a more “traditional” way, in a new place with new friends, perhaps things will change for us in 2016.  Maybe add just a little bit of magic for a few changes to happen that might help make life a little more simple and a little more easy for us all.

Happy New Year to all of you from the entire Rabinowitz Tribe!  We wish everyone much happiness, health and Peace in 2016!  Thank you all for continuing to be a part of our family’s lives!

A Long Way to Cologne…

…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.

 

A Few Wise Words About Bad Words

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.

Gone Fishin’

fishing boy

It started with a dollar store fishing pole,  various plastic sea life, and a cheap blow-up wading pool. Although, we probably should have seen this one coming as Henry has always liked string, ribbon, yarn, rope, basically anything that can be whipped around and/or tied onto something and used to drag, pick up, or tie together. You get the idea.

Henry would place things around on the floor and then hold one of his tow trucks up using the string and hook to try to pick them up. When I asked him about it he said, “I’m fishin’.” He began to “fish” more often with just about anything he could get his hands on that he thought he could get to work. Toys were starting to get “broken” with pieces missing. Eventually I would find those pieces tied to yarn or string and being used at “bait” or a “hook”.  Any toy with a magnetic end was even more prized!

Being that BDC and I can be a little slow on the uptake sometimes, it took a bit before we thought of the plastic fishing pole.   It was a hit!  “Duh!”

At one point Henry began asking for an aquarium.  At first I thought how great this was that Henry could identify that perhaps this would be calming for him.  And then I realized…

“Henry, you know that if we get a fish aquarium, you can’t actually ‘fish’ in it.”

“Oh.”

He stopped asking for the aquarium.  The plastic pole and wading pool would have to suffice.

A couple of years ago, one of BDC’s sisters and her husband bought a home on a lovely private lake.  BDC’s family loves to fish and the private dock was perfect for casual fishing.  On one of our rare visits out that way, we introduced Henry and Lucy to reel fishing. (Spelling pun intended. Sorry. Couldn’t help myself).    Given the low threshold for patience, Henry doesn’t always respond well to instruction.  He thinks he knows and he can do it himself.  Then frustration sets in and he relents to some very brief teaching.  Despite having small outbursts regarding bait/flies, casting form, and not catching any fish, Henry seemed to enjoy actual fishing.  (In regard to the reference to “actual fishing”, it should go without saying, “relatively speaking”.)

Back then Henry’s bug issues were not near as bad although the dragon flies and occasional wasp buzzing by was met with an outburst, he was distracted enough to keep at it.   Cast, reel in.  Cast, reel in… did I mention Henry’s impatience and that we were on a small lake?  The bobber scarcely hit the water before he was reeling it back in.

Note to Uncle Kevin and Aunt Lisa:  Your nephew may have potential as a successful trout fisherman if you ever want to take him fly fishing!  Except you’ll have to clear out all of the bugs first.  Good luck with that.

Since the legendary “Cicada Swarm of 2011”, Henry’s fear of bugs has gotten worse every year.  He’s progressed from it being an annoyance to a dislike to an all out panicked phobia.   It’s been a real problem this summer.

This past June, we once again headed out to BDC’s sister’s place.  All Henry and Lucy can talk about is fishing out at Aunt Leslie’s and Uncle Jay’s house!  I was completely prepared for Henry to take one step out the back door, discover a bug, and spend the remainder of our stay inside.  Surprisingly he made it through the yard and down onto the dock with only a few shrieks and episodes of spastic waving of his arms to keep away any bugs; real or perceived.

This time around, both Henry and Lucy were really getting the hang of casting and they were doing a pretty impressive job at it.  Henry even kept fishing after getting a hook caught in his hand!  Luckily for me I was inside at the time and Grant got to deal with that. ~Thanks, babe!  Anyway, Henry got right back in there and kept fishing!  That’s HUGE!  Henry still won’t touch the bait, whether it’s real or artificial and certainly as much as he wants to get close to a caught fish, he can’t get too close.  But I can’t blame him there.  It wasn’t until I was an adult, that I could bait my own hook.  And sometimes I still get a bit squeamish when taking a fish off the hook.  I’m just so proud of Henry that he kept at it even with all the challenges around it that he had to deal with!

I have always enjoyed fishing and I would love for the kids to stay with it.  This could be one of the simple and rare activities that we could all enjoy doing together as a family!  How cool would that be?!?  And it will be interesting to see what Henry does when he actually catches a fish some day!

gone fishin sign

Even Simple Can Be Difficult

[Ed. NoteThis is my first writing since May.  I know.  It’s been too long.  I know.  I’ve written something now.  So, that is that.  If you feel you can get over it, please read on. ~Thank you for your understanding.  It is much appreciated!!!  😉 ]

We’ve been on this autism journey for close to 4 years now.  (Even longer if you count the time before the diagnosis.)  You’d think, at least I think, that we would be better prepared for…you know, anything.  In our case, occasionally sometimes  often, there is not near enough of the preparation.  And it kicks me in the gut every time.

Lucy had a friend, Zach*, over and the kids were playing so well that he stayed for dinner.  On a whim…I know.  See?  There was my first mistake.  Anyway, moving along… On a whim, I thought it would be a nice treat to stop at a near-by sno-cone shack on our way back to Zach’s house.  It’s rare that we do these kinds of things and I really didn’t think about this as being anything other than a typical, fun summer experience.  (Mistake #2 for those who like to keep track.) In the car we told the kids where we were stopping and the news was, of course, well received.  We got our sno-cones with no fuss.  Even their choice of flavors were quickly decided upon.

Because my husband has issues with kids eating shaved ice, covered in sticky syrup, packed high above the rim of a styrofoam cup (or anything else remotely messy) in our van, we would eat outside.  The breeze was lovely enough that it was pleasant outside…if you were sitting still in some shade, eating a deliciously cold treat.  Which was my plan. (Mistake #3, thinking I actually had “a plan”.)

Due to Henry’s recent paralyzing fear of bugs (which seems to be getting progressively worse and which we’ve been battling all summer)  I did a quick scan of the surroundings to scout our options while we waited for our order.  There were only two other patrons sitting on their car on the opposite side of the lot.  I chose well, or so I thought, by picking an umbrella-covered table away from the others that wasn’t at all sticky.  No trash cans or potted, flowering plants were anywhere near-by.  It was actually located on the paved lot right next door to the sno-cone shack.  This meant we had to cross a very short, grassy incline.  Icy treats in hand, we headed that way.  Henry hit the brakes as soon as we got to the grass and refused to go further.  My heart began to sink.  I immediately got a bad feeling about where this was headed.

Grass equates to clover which means bees and other bugs.  I got Lucy and Zach settled at the table while BDC dealt with Henry.  After quite a bit of encouragement he made it to the table.  But he refused to sit.  Henry was in all-out panic-mode, searching the area for flying and crawling bugs.   He was continuously jumping and darting away from “bugs”.    No amount of reasoning or encouragement would stop his outbursts and crying about these perceived bugs.

Now, as someone who also hates bugs, especially when I’m eating, I can tell you that there really were no bugs!  There were none on the table or the on the ground around the table.  Only an occasional fly or dragon-fly-type bug would buzz past well away from us.  Even if you were paying attention, which I most certainly was, there would have seemed to have been no bugs at all.

As a full meltdown ensued, BDC offered to sit in the van with him but he would have to leave his sno-cone at the table.  Whether or not we made the right decision on that, I don’t know. (Probable mistake #4)  But, in this situation we stuck to our guns about not eating these drippy, messy things in the van.   Off they went, with Henry not only upset about the bugs but also having to leave his sno-cone behind.  Yet, he did.

I sat with Lucy and Zach as they enjoyed their sno-cones.  With a lump in my throat I watched Henry’s begin to melt.    I was struggling not to let tears well up in my eyes.  Even going for a summer treat just couldn’t be simple.  And most certainly it was not fun for the little dude.  When I couldn’t take it anymore I sent a text to Grant.

“Is he calm at all?  What do you want to do about his sno-cone?”

At this point, please know that my concern about the sno-cone was nothing to do about it going in the trash.  It was about my boy  missing out on something he loved and had earned.  That is what was breaking my heart.

After a minute or so, I saw the van doors open and I could hear Grant talking to Henry.  He was going to try again.  I know Henry wanted to enjoy his sno-cone,  just like any kid would.  But for him, right now, outside is just so very difficult.  Henry was relatively quiet (I use the word “quiet” loosely here) as he walked back to us but he was nowhere near calm.  At this point he was truly terrified of a bug getting on him or even near him.  I got him to sit next to me and he asked me to hug him and hold him tight.  I promised him I would not let any bug get on him and I would keep them all away.  He got through about 1/2 his dessert but just barely.  It was too much.  He was done and begged to go back to the car.  Grant went with him.  I sat for a few more minutes with Zach and Lucy while they finished up and we soon headed back to the car as well.

Henry was already so much more relaxed back in the van.  But that didn’t make me feel much better.  I question just about every decision we make when it comes to our kids, especially of course, when things don’t go well.   We try, very carefully, to calculate the situations or experiences  where we might want to “expand our Kansas”.   With Henry, we need to push (gently, carefully) to try more things, DO more, experience MORE.  Was it wrong to want to be able to sit outside with our sno-cones?  Should we have let Henry sit inside while the rest of us sat outside?  Should we even have attempted this at all just “on a whim”?   What was I thinking?!?  How could I not have seen the potential disaster in this?  On the other hand… it was just going for a damn sno-cone!

Clearly, this experience was DIFFICULT for Henry.  Painful, even.   Which, of course,  makes it painful for Grant and me.   We want to help him.  It frustrates us when we can’t and it’s maddening that the things we need to help him with seem so small, so simple at times.  And sometimes that can be difficult for me to accept.

*NOTE:  Zach’s family has become good friends of ours over the last year.  Zach has a twin brother with autism.  Through this whole ordeal, Zach went on as if nothing out of the ordinary was happening and continued to behave wonderfully!  We are grateful to have friends like Zach and his whole family!

I Saw the Light

I woke up this morning at 4 o’clock and couldn’t get back to sleep. Hubby was up at 4:30 (not all that unusual for him though). We were enjoying a quiet morning (as much as one can “enjoy” anything at 4AM) drinking our tea and watching the news. Next thing we know the boy is up and crawling into our bed.

BDC: Hey, Henry, what are you doing up so early?

Henry: I saw the light.

Me: It’s not light outside.

We encourage him to not get out of bed until the light shines through his curtains.

Henry: I saw the light inside.

BDC: Your door was shut Henry and only the kitchen light is on. (A small one over our sink)

Henry: *in his “duh!” voice* Uh, the light under the door.

Oy vey!  Now Lucy is up too!  Of note: the teen who is SUPPOSED to be up now, is still sleeping with her alarm going off. Looks like this is how we’re rolling today… :-/

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