Our journey in the Autism Spectrum

I’m trying to be understanding.  Compassionate.  Really, I am.  But son of a bitch! Henry’s anxiety seems so irrational, ridiculous even, these past several months!  I feel horribly guilty about this.  More often than not, I am so.tired.of.it!  I lose my patience.  A lot.  I get anxiety about his anxiety.  Just STOP it already!!!

Ok, bug phobia, sure.  I get it.  We’re working on it.  Five years of working on it but still, fine.  Whatever.  Waking up at night with panic attacks is a little bit trying. Sometimes more than a little bit; Henry waking up out of a dead sleep (because we do check on him and KNOW he is, in fact, sleeping!)  saying he can’t sleep and crying and whining and screeching, unable to tell us WHY or WHAT is causing him such distress.  We try to calm him down.  He tries to calm himself down.  We remind him of relaxation exercises he can do.  He has a few YouTube videos that he can go to as well.  We’ve been to a psychologist to help us through this.  It was getting better.  Now it’s not better.  Almost-every-night not better.  He NEEDS to wear one of his dad’s hats to bed.  He MUST have one of my pillows or stuffed animals to sleep with.  (Yes, I have a stuffed rainbow chameleon. Don’t judge.)  We allow him these things, of course.  It does help.  Sometimes.  After what feels like hours of trying to talk him off a ledge.

The “newest” anxiety revolves around waiting for the bus.  For all of his school bus riding life, Henry has always had trouble dealing with the waiting for the bus, the worrying about missing the bus or the bus being late.  We’ve had complete meltdowns in our driveway over this.  Did I mention the bus stop IS our driveway? This school year he seems to be adding another layer to his worry.  This year he not only wants to go outside and wait for the bus 15-20 minutes earlier than he needs to be, but he doesn’t want to go out and wait alone.  On our porch.  With the front door open where Lucy sits on the couch and they can see each other.  He wants one of us out there with him.  Why? Because he’s afraid of flying bugs and now BIRDS.  But, you know, he can’t wait inside because he doesn’t want to miss the bus!!!!  Good gods, please give me strength!

This morning, as I finally aquiesced to sitting in the front room with the door open so we could see each other.  (Since Lucy had an early morning activity and was already at school)  I listened to him and watched him for 10 minutes, talking out loud to himself and pacing, pacing, pacing.  Repeating over and over, “I’m okay. I’m okay. I’m okay.”  All the while walking back and forth on the porch ducking from and swatting at invisible bugs and birds. Now, lest you think I’m so cruel as to sit inside and watch my son suffer through this, please know that he will STILL exhibit these behaviors whether or not Lucy or I are outside with him.  This morning I just could not bring myself to sit out there.  Sitting inside I can still watch him but look away, distract myself from his physical actions and verbalization.  Sitting outside with him, his anxiety just gets on my last nerve.  I’m not a morning person and I’ve barely had one cup of coffee before it’s time for the bus.   And his anxiety gives me anxiety.  Like there is a weight on my chest that I just can’t get rid of.

Perhaps it’s time to go back to the psychologist.  I kind of dread that.  It’s out-of-pocket until our deductible is met. That sounds terrible, doesn’t it?  I mean, I should put a price on my son’s mental health?  Still, it’s something we need to consider. More than the money, of course, I am most worried about anxiety meds being suggested.  Again.  I was really hoping we could get through this with some behavioral techniques and learned coping skills.  Meds can be such a slippery slope…though, maybe he needs that.  I don’t want him to suffer but I know sometimes adding medicines can add to problems with side effects, etc.

Ultimately we will do whatever we need to do to help Henry.  To help him be the best that he can be.  But this morning, well, this morning was downright painful and annoying and I just couldn’t deal.  I’m trying so hard.  Every day I want to help him so badly and I wish more than anything he didn’t have these anxious feelings. Some days though, I’m just tired of it.

 

It’s a Classic Halloween

I’m just now getting Henry’s Halloween costume ready.  I’d like to say that he is a last-minute-decider but more accurately I am a last-minute put-it-together-er.  For those who may not know, I am not a Halloween costume person.  At all.  I don’t sew, or pin or Velcro and only on rare occasions do I hot glue.  I am not creative or crafty when it comes to that kind of stuff.

While I love the fall season with all of my being and embrace the sentiments of Samhain/Halloween and Day of the Dead, it’s putting together the costumes that scares me the most!  My anxiety and procrastination skills ready themselves to rear their ugly heads.  Of course Lucy wants to be some Pokemon that I have no idea which one it is. It’s apparently just obscure enough that they don’t mass market a costume for it.  Fortunately I have a super awesome friend (that does all of the crafty things listed above that I don’t do) that said she would sew Lucy’s costume seeing as her daughter is being some other relatively obscure Pokemon.  (And I can’t thank you enough, Crystal!!!) So, now all I have to do is take care of Henry.  Please let him want to be something I can buy, please, please!  And then…

Henry tells me, “Mom, I want to be a ghost for Halloween.”

I’m not totally clear on what he means by this so I take a chance and ask, “Like a sheet-over-your-head ghost?”

“Yeah. I figured since next year I’ll be in middle school I might not want to dress up. So, I say why not go with a classic? Go big or go home, ya know?”

“You’re goin’ old school, huh? Really? Just a plain white sheet? Are you sure?” I can hardly believe it!

“Yeah, Mom!  It’s CLASSIC!”

Hey, I just might be able to pull this one off! Of course I have plenty of time…

So we finally made the trek to a nearby resale shop.  Because no way am I buying a new set of white sheets.   “go big or go home” does NOT  in any way amount to 800 thread count Egyptian cotton.  Not in my house.  Unless, of course, I can’t find anything else in the 45 minutes I’ve allotted to shop for said sheet.   Then I’ll sell my soul if I have too.  As we peruse the Bed & Bath section, I see a lot of sheets.   All with patterns, of course.  Not one plain white.  But then I spot it!  One all white, king-sized dust ruffle for $3.99!  Sweet goddess, thank you! It’s a Halloween miracle, folks!

Now all I have to do is cut off the “ruffle” along the bottom, and holes for Henry’s face and hands. And I’ve still got 3 days to do it.  But you can pretty much bet that I’ll be cutting Sunday night. I am ever so grateful that my son appreciates the classics!

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!

ABA and positive parenting

It was when Henry was 4 years old that we got the medical diagnosis of autism. It wasn’t so much a shock as it was an overwhelming wave. We began O.T., integration therapy and speech therapy almost immediately and we started looking at his preschool to screen for an educational diagnosis. I tried to read as much as I could about autism therapies, attended conferences and workshops. There are a lot of “therapies” out there. I knew that beginning a therapy program earlier rather than later was important. I also knew in my gut that whatever route we chose it would be essential that it fit with Henry’s personality and learning style. Also, realistically, it was going to have to fit in with our families lifestyle and personalities as well. If we couldn’t have the consistency at home as in a therapy setting, over the long haul, and as we all know, this haul is LONG, what good would it do? A few seemed they could be quite helpful. Many had that “too good to be true” feeling about them. And still others had “sham” written all over it. In the small print, between the lines…in invisible ink. I was trying my best to educate myself so that we could make an informed, intelligent decision on what might best help Henry. It was terrifying.

Our pediatrician, who diagnosed Henry, encouraged us to call a local autism non-profit organization for help with programs, additional resources, therapies, etc. (And, yes, it was our general pediatrician that worked with us. We do not have a neurologist, or a behavioral pediatrician, or a psychologist. We just have our amazing general pediatrician and for that we will be forever grateful to him!) It took me a year to make the call but finally, this is how we found the ABA program that changed our lives!

Yes, applied behavior analysis (ABA). It POSITIVELY changed our lives.

Applied behavior analysis is defined as “the process of systematically applying interventions based upon the principles of learning theory to improve socially significant behaviors to a meaningful degree, and to demonstrate that the interventions employed are responsible for the improvement in behavior.”

What I loved about our experience with ABA was that it “merged group instruction with guided observation, one-on-one sessions with the client and coaching of the parent or other caregiver.  Parent training was not just about teaching skills to the child, but teaching us parent how to best understand the child and the nature of their disability.” (learn more about Easter Seals Midwest and their programs here. ) I got to practice what we were learning right along with my son. Together! For two weeks my husband and I were coached, supported, and encouraged by our certified trainers. It truly was a mindfulness-based parenting approach in an ADAPT (Active Discovery and Participation through Technology) type model.

I learned to really see my son and learned how he processed things. Our communication was immediately improved. This program taught us HOW best to communicate with Henry and in turn, he learned how to communicate with us! Easter Seals Midwest’s program most certainly went beyond discrete trial teaching! (learn more about ABA and discrete trial teaching here.) Once we were able to communicate, Henry’s world began to open up to us and our world opened to him! It was, and still is, hard work. It takes continual practice but with this we’ve been able to slowly generalize these skills into everyday settings.

We are almost 5 years out from our initial 2-week parent training. Henry has been in mainstream school since Kindergarten and is going into 4th grade in the fall. Henry has autism. He will always have autism. That’s a part of who he is and we never want to change him into someone he is not. What we want for him is to be the very best Henry he can be. As he grows up, there will always be new challenges, new anxieties, new difficulties in his path. Because of what all three of us learned in parent training, Henry is not just aware of his feelings but can identify them and verbalize them. He has acquired wonderful coping and communication skills, all which continue to evolve. He is able to adapt and generalize these skills into his every day life and learning. He is happy. He is healthy. And he has very proud parents that are positive of his success!

ABA and positive parenting~it truly is what’s inside the program and inside us that makes all the difference.

#positiveparentingday

This past Friday my kids had a half day for their last day of school. To celebrate I offered to take them out to lunch. After minimal debate and a 2 out of 3 challenge of rock-paper-scissors, Culver’s was the winning choice.

As we sat and chatted about the last day and plans for the summer, a mom at a nearby table with a young girl and boy were enjoying lunch as well. Both children were very well-behaved. They were slowly finishing up and as they were gathering their things to leave, the little boy darted over toward our table and plucked a french fry from Henry’s tray and popped it in his mouth.

It all happened so fast that I don’t think the mom even noticed until Henry exclaimed, “My fry!”

I was immediately grinning, trying to reassure a stricken Henry that we did, in fact, have plenty of french fries to share. The other mom looked horrified and immediately started apologizing even though I told her it was really ok. We understood because we like french fries too!

She asked her son to say he was sorry and this sweet little boy said, “I’m sorry. I know better.” I told him thank you for apologizing but it was okay. Then Henry surprised me by offering the boy another fry!  He took it and ate it with such joy. Then he held out his hand and said, “May I have more?”

Henry was on it and quickly offered him two more fries which the boy happily gobbled up. This mom looked so relieved and we struck up a brief conversation about kids, picky eaters, french fries and ice cream. I mean, we were at Culver’s after all. I totally get it!

I was so proud of Henry handling this situation with such grace. This had the potential of throwing my boy for quite a loop! Henry not only held it together but was able to turn his shock of a stranger grabbing food off of his plate into generously sharing with this boy!

After we left, I began to wonder, if there was some kind of moms-of-special needs-kids connection that this other mom sensed. You see, her boy had several characteristics of having Down syndrome. While you can’t always “see” Henry’s autism, it is obvious that something is a bit different in his speech and mannerisms if you watch and listen to him long enough. Had she noticed?

I admit I had been watching this other family all the while we were there. I was impressed how self-sufficient that young boy was; eating neatly, cleaning up after himself. All under the careful watch and only minimal instruction from his mother. Now I wonder if that mother had been watching us too. (Obviously, her little boy had been. Well, at least our fries were in his sights.) Usually I don’t concern myself with what other people think, though I do want to always want my kids to show good manners and courtesy toward others! I can only hope we left as positive an impression on her as they left on me!

And they like french fries and frozen custard!  That must mean they are good people! Right?!?

Frozen custard and french fries

[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.

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