Not Exactly My Moment of Zen

Sorry it's been awhile. Just needed to recuperate from the Wedding-Pallooza that took place this weekend. Suffice to say, a fine time was had by all. Mike's family is a blast and with all of us staying at the same hotel, we counted ourselves lucky to not get kicked out for being loud and obnoxious. Mike and I enjoyed our temporary state of being childless, but as is so often the case, our tolerance for such is short lived. After about a day, we always feel the two of them tugging our heartstrings from miles away, pulling us quickly back home.

So, after the 4-hour drive from Buffalo (yawn!), we got back to our sleepy little town. My mom who lives right down the street from me was watching the boys, so I walked over to her house to retrieve them. As I walked in, Justin's face lit up and he wrapped his arms around me hugging me tightly.

As if!

The truth is, when I saw Justin, he looked positively nonplussed.

No, erase that. Actually, he seemed pissed. In a, "Where the hell have you been?” kind of way.

As we walked home, I received the cold shoulder treatment for most of the remainder of the day. Not the warm homecoming I was hoping for. It was, however, the homecoming I was expecting.

Yes, this chilly reception came as no surprise. For starters, Justin doesn't do hugs.

To be clear, he loves receiving affection. He happily snuggles on my lap, nuzzles his head into my neck and gives the sweetest kisses ever. It's the act of wrapping his arms around me and holding on that's the issue. Unlike his brother who skillfully climbs me like a monkey scaling a tree, when Justin is in my arms, if I were to ever let go, he would simply drop like a box of rocks.

In recent memory, Justin has hugged me once. It was so odd. I was at the gym for about an hour and when I returned home, Justin ran into my arms as if he hadn't seen me in days. For about 15 minutes, he just sat in my lap and stared at my face, studying my features. Then, slowly...carefully, his tiny arms wrapped around my shoulders and he squeezed.

The sensation of his embrace was so foreign that it really was at that exact moment that I realized I had no memory of feeling it before.

I'm not sure what was going on inside of that little head to warrant such affection, but it hasn’t happened since. Of course, now that I know what I'm missing, I've been like an addict seeking out my next fix. I was hoping maybe, just maybe with me being away overnight that he might just again miss me enough to reward me with a squeeze.

Alas, it was not to be.

When I really want to torture myself, I think about how scary it must have been for him at my mom's house. Not that my mom is scary (love you, Mom), but how do you explain, "Mommy and Daddy will be back tomorrow," to a child who has no concept of time? Was he waiting for us to show up? With each hour that passed and we didn't appear, what must that have felt like?

Luckily, I'm not quite that much of a masochist. I do realize that the ability to cope with stress is like a muscle that needs to be worked. Justin's never going to learn to "roll with the punches" if we don't ever put him to the test.

So, we will continue to push Justin outside of his comfort zone and he will continue to get pissed.

But eventually, he will get more adept.

And eventually, I will get my hug. Oh, yes. I will get it.

Escape (part 2)

The world of developmental disabilities is not a new one for me. After I graduated college with my degree in social work, I quickly got a job working in a residence for adults with autism and mental retardation. While the work was tough (low pay, crappy hours...the typical "pay your dues" kind of job), I fell in love with the clients I worked with. They were funny and fascinating people. I also met many of my close friends at that job and we would hang out frequently outside of work. A running joke amongst us was that no matter where we would go on our days off, we would always encounter "clients". Probably because that was our life and we were more likely to notice certain behaviors that others might not. The funniest and most unexpected place we ran into this phenomenon was on vacation in Ireland. A bunch of us were staying in a hostel and shortly after checking in a bus of about 10 young adults with Down's syndrome arrived. We laughed and jokingly said, "There's just no escaping them".

Fifteen years later, I must admit that I don't notice adults with disabilities as much, but it seems that I encounter ASD kids everywhere I go. Again, I'm sure it's just that I'm hypersensitive to the signs. On the other hand, maybe it's because the rate of autism keeps increasing at an alarming rate...but I digress.

So, as you may recall, yesterday I found myself at the mall shopping for the perfect dress to wear to my cousin-in-law's wedding. Of course, what good is the perfect dress without the perfect pair of strappy sandals?

I was on the hunt and was ultimately lured into the shoe store with the "Big Blowout Sale" sign in the window. In I went, and started my search.

As I was looking amongst the peep-toe kitten heels and the funky wedges that I love, but could never pull off, I heard an odd yet easily recognizable exchange.

"Mommy, I want to go to the toy store. I want to go to the toy store Mommy."

"Okay, honey. Dad just needs to pick out his shoes then we'll go to the toy store."

30 seconds later.

"Mommy, I want to go to the toy store. I want to go to the toy store Mommy."

I knew before I even spotted the child that he was one of ours. The scripted phrasing, the intonation, the talking at instead of talking to. It all sounded strangely...familiar.

As I rounded the corner of the shoe rack, I spied a young boy around the age of 12, rocking furiously back and forth. His mother was sitting next to him trying to look inconspicuous.

I smiled at them as I walked up to the cash register with the sandals I had picked out.
Once at the register, the boy's father stood behind me in line. The store was nearly empty and it was quiet...except for the boy. He had now started "yelping", somewhat loudly.

So much for inconspicuous.

I looked up at the cahier who looked visibly uncomfortable. Like she knew something wasn't right but wasn't sure what was going on or even what to say.

"I’m sorry", the father said, "my son has autism".

I thought about that statement.

I'm sorry

Like it's not enough to have a child with autism, but to feel the need to apologize for him. His son wasn't being anymore annoying than someone talking loudly on their cell phone, but I don't see them apologizing (sorry... pet peeve).

There was an awkward silence as the cashier finished ringing me out. The cashier looked uncomfortable and the father looked embarrassed.

"My son is on the spectrum too".

The words came out of my mouth before I even knew I was saying them. There was just no way I could stand there and not say something. No way I could not extend my secret handshake and let him know I was a fellow member of the club. No way could I not give him the gift of recognition.

He smiled.

"How old is he?" he asked.

"He'll be 4 in a couple of weeks."

"Aww, that's a cute age".

Then he looked like he wanted to say something else, but stopped short.

The cashier handed me my bag.

"Have a great day", I said as I grabbed my purchase and headed towards the door.

Just as I was about to head out, he yelled,

"Hey...Don’t ever give up."

I stopped and turned to face him. He looked tired. Looking at his son, it was obvious that he was much more affected than Justin will ever be. I'm sure he and his wife have been there and back again.

And yet, here he was giving me the gift of hope.

I swallowed hard, the lump in my throat, and said,

"Not ever."

And, with that, my strappy sandals and I headed home.

Escape (part1)

So, my husband and I are heading to Buffalo this weekend for his cousins wedding. His family is a lot of fun and it's sure to be a good party. What's particularly exciting is the thought of having a night away from the kids.

Mike and I are in desperate need for some fun Mommy-Daddy-alone-time. Truth be told, things here at the old homestead have been a little tense. Mike was laid off from his job awhile back and is struggling to find another. The longer the search continues, the more it is becoming a distinct possibility that I will have to resign my position as stay at home parent and go back to work instead. A daunting thought after being out of the workplace for over six years. We've also been dealing with Ryan's mood swings, as he's equal parts excited about summer vacation and anxious about the change in routine. Add to that, Ryan has pretty much decided that both his parents are "lame" and is treating us accordingly, thus making him a not so fun child to be around lately. About the only one who isn't stressed out is Justin, who is happily enjoying his 2-week vacation before he returns to school for summer session.

So, in looking through my closet for something appropriate to wear to the wedding, it became glaringly evident that I had nothing. As a stay at home mom, I rarely have the need to get dressed up, or, you know, get out of pajamas. I did have one dress, but my husband was quick to point out that it made my "boobs look flat". Yeah, not exactly the look I was going for.

Time to go shopping!

As I said, given the current tension in the house, I was thankful for an excuse to get out of the house. Hell, I was downright giddy. I didn't even feel the least bit guilty when Ryan, upset that I was leaving, pressed his tear stained face against the window and waved good-bye.

Okay, that's a complete lie. I totally felt guilty, but still I peeled out the driveway, leaving tread marks behind me.

It's about a 30-minute trip to the nearest mall and I honestly don't mind the drive. Driving in the car is one of the few opportunities I have to be alone. So, I turned on the radio and immediately smiled at the song that was playing.

Show me how you do that trick
The one that makes me scream" she said
"The one that makes me laugh" she said
And threw her arms around my neck
"Show me how you do it
And I promise you
I promise that I'll run away with you
I'll run away with you"

Any Cure fans out there will recognize these lyrics to Just Like Heaven. I smiled because this song was a perennial favorite in the soundtrack that was my life before Mike and the boys. My life as a single gal seems so far away, but this song brought me back to that place like a hug from an old friend.

That place of hysterical roommates and lunch with girlfriends. That place of boyfriend drama and late night dancing. That place of staying up all night to talk about life while drinking too much wine.

That place of freedom and lack of responsibility.

It was fun to visit those memories, but I didn't let my mind linger there for long. Because as seductive as it is to remember those times as being carefree, they certainly weren't all fun and games. In particular, the one thing I worried about more than any other, was would I someday get married and have a family.

I remember with great clarity my 30th birthday. My friends and family threw me a surprise party and I remember thinking how lucky I was to have such wonderful people in my life. But, at the end of the night, I was alone. It just felt somewhat empty. It was just a month later that, I met Mike and we have been inseparable ever since.

The last 10 years have been a whirlwind of a ride and it's hard to believe we crammed so much into such a short period of time. A wedding, two houses, two children. Whew! No wonder I'm so damn tired all the time.

Now late night dancing has been replaced with bedtime stories and prayers. Now lunch with girlfriends has been replaced by family dinners around the table.

And while my life is certainly no longer characterized as free and lacking in responsibility, I wouldn't trade it for those days of my youth for all the tea in China.

Having said that, I still drink too much wine.

And, by the way, the dress I bought for the wedding is to die for.

Don't ask...Don't Tell?

For almost a year after Justin's diagnosis, I hardly ever uttered the word autism. The only people that were aware of our situation were close friends and family. If the issue did come up with others, I would simply say that he had a speech delay. Deficits in language have always been Justin's biggest issue and at the time, I could write off any other strange behaviors as him just being two. He could quite easily fly beneath the radar.

Then he turned three and the gap between he and his peers widened ever farther. Yet I still struggled with saying Justin was on the autism spectrum. Not so much because I was in denial, but because I was always very careful to question my motives. Does my telling someone "our secret" make things easier for him or for me?

What I mean is, it would have been infinitely easier to explain away some of Justin's tantrums and meltdowns to the other playground moms by saying "My kid's really not a brat; he actually has autism". This would take care of the questioning looks and might even illicit some tea and sympathy. Well, that may make me feel better (in a "see, I'm not really a terrible mother, my child actually has a disability" kind of way), but was this really the best thing for him?

Because in acknowledging his "neurodiversity" I risked exposing him to everyone else's preconceived notions as to what autism is. This is particularly jarring when you realize just how many misconceptions are out there. We live in a small town and the same kids that he encounters on the playground are the same kids with whom he’ll be attending school. Did I really want to risk people treating him at best with pity and at worst as an outcast?

Ironically, I think it’s the invisibility of his disability that makes it hard sometimes to know what's best. As spectrum disorders go, Justin is mildly affected. As per his developmental psychologist, she believes it is possible that he will eventually “grow off” the spectrum altogether. But if I acknowledge him as being on the spectrum, even if at some point he loses this diagnosis altogether, I feared he'd still always be that "different" kid.

The kid that other parents might not let their kids hang around with or let their daughters date because they assume he's too weird. The kid that teachers might give up on because they assume he's unteachable.

Like it or not, there is a stigma associated with autism. Even if an autistic child is acting in a way that is completely typical, albeit obnoxious, it tends to take on much serious overtones. If, for example, a typical child throws a fit in a grocery store, they are considered nothing more than an undisciplined child in need of a good talking to. When a child with autism throws that same exact tantrum, they are seen as a mysterious "puzzle" of a child that people feel sorry for.

Given these two options of how Justin could be perceived, I didn’t like either of my choices.

I must admit, I really never used to “get” what autism awareness was all about. I mean really, isn't everyone aware that autism is reaching epidemic numbers. However, the more I travel on this road I'm starting to see autism awareness in an entirely new light.

It's about teaching people that our children (typical vs. ASD kids) are in many ways more alike than different. They all have their quirks and idiosyncrasies. They are all in need of our patience and support...just some more than others.

There is a wonderful writer named Jess Wilson who writes an achingly beautiful blog about her family. Her youngest daughter, Kendall is on the autism spectrum. I stumbled across her blog quite by accident one afternoon and found that an hour later I couldn't stop reading. One of her posts in particular resonated with me in a way that nothing else ever had. She wrote, "I feel like a broken record. I’m tired of hearing my own voice. But if we don’t talk about it, who will? If we don’t stand up and say that it’s ok to be different, who the hell will? If we don’t talk to parents of typical kids, how on God’s green earth will their children ever know that they can’t laugh at the weird kid in the corner who doesn’t quite fit the mold or the odd little girl who runs up to them and starts yelling entreaties to ‘do Deebahs’ with her? That kid is my kid. That kid is your kid. Hell, we are all that kid. I am frustrated. I am tired. I am angry. He was laughed at. Not ok. Not on my watch. Not in my own back yard. Do something."

So I did.

The very next day I started this blog.

I can't say that the word autism doesn't still get stuck in my throat. Some days I just don't want to deal with any of this. However, writing has been wonderful therapy and I will continue to do so as long as people are willing to read. With this blog comes renewed strength and energy to fight the good fight. Not just for my child but for all others like him.

Because, to borrow another powerful paragraph from Jess's blog,

"I don’t know what to do other than to talk to people. To educate them one by one. If they don’t know who our children are and what they face, then how the hell can they help us protect them? If we hide, do we not bear some of the responsibility for the teasing? Are we not to some degree complicit in making our children angry sad? I refuse to believe that there’s nothing we can do. I’m tired of helpless."

Rock on, Jess. You are truly an inspiration.

Movin' On Up

I never used to be someone who cried a lot. Honestly, even when Justin received his diagnosis I didn't shed a tear. Not at first anyway. It was just all too surreal.

I was so thankful for the distraction of the Internet. It allowed me to dive into researching all that I could about autism and treatments and recovery. I never once allowed myself the thought that Justin would be anything less than fine.

This was how I coped at the time, but ultimately I think I did myself a diservice. Because all of my reading and research prevented me from sitting in that sadness and having my watershed moment. I sometimes wonder if this is the reason why now I seem to shed tears at the slightest proviclation. I went from being someone who hardly ever cries to someone who cries all the time.

Not that I'm at all okay with that. It's embarassing to be in front of others and out of nowhere just have the tears come bubbling up from the places I didn't even know existed.

So, it was with this sense of dread that I attended Justin's "Moving Up" ceremony. Justin has just completed his first "semester" at is integrated pre-school and they had a very sweet assembly to commemorate the event. I tried to keep things in perspective. After all, this isn't his high school graduation or his senior prom. He is simply moving up from the 3 year old classroom to the 4 year old classroom. Truth be told, he's still going to be in the 3 year old room throughout the summer so he doesn't even technically "move up" until September. So really, it was no big deal.

Or at least this is what I told myself in a very lame attempt to not start bawling like a baby in front of all the other parents at the ceremony.

And then the ceremony began. And as he walked in the room and sat in his designated spot I knew I was in trouble. Because I realized that this was a very big deal indeed.

A year ago he would've walked into the room filled with close to 50 parents, with cameras flashing and video cameras rolling (mine included) and he would not have been okay. He would've been scared and confused and likely would've melted down.

A year ago he wouldn't have been able to learn all the words to the "Cuppycake Song" that all the kids sang. He wouldn't have been able to imitate the other kids jumping up and down for the "Popcorn Song". He wouldn't have been focused enough to look for me and my husband in the audience, spot us and then smile and wave while still sitting calmly in his seat.

When you spend so much time with your child, it's hard to remember sometimes just how far they've come. When every "next step" seems to come so excrutiatingly slow it's good to have ceremonies such as this to look at our kids with fresh eyes and marvel at the hard work they've done.

So, did I cry? Well, I am proud to say that with tremendous effort, I choked down the huge lump in my throat and managed to dab just a few tears from my eyes.

Not too bad.

Of course, next year he'll be graduating from pre-school to Kindergarten.

I'm doomed.

Thank You....

For being the rock on which I stand.

For all the times you've played swords and light sabers.

For letting the boys "beat you up" even when I know you're tired.

For bringing out the best in our boys..and in me too.

For never doubting that our boys will be exceptional.

For making it your mission to find "Odie" when he was lost on a trolley in Maine.

For instilling in our kids your love of music.

For always making dinner and never grumbling about cleaning the kitchen.

For your creative energy and sharing it with the boys.

For seamlessly taking over when you know Mommy needs a break.

For being their hero.

For never being self-conscious about kissing your boys.

For the thousands of mental snapshots I have of tender moments between you and your boys.

I thank you.
I love you.
Happy Father's Day.

The Little King

Also known as Ryan

When my husband and I were picking out names for our first born, we really liked the name Ryan and chuckled when we read that Ryan meant "Little King" in Gaelic.

Little did we know just how much Ryan would live up to his name.

Ryan is simply a force of nature.

That's why I love the above picture of him. Because it just encapsulates everything that Ryan is.

Joyful
Energetic
Goofball

Ryan is a child who marches to the beat of his own drummer.

I would love to tell you that the amazing spirit contained within this child brings nothing but joy to our household. However, the truth is it is a mixed blessing.

With his love of socializing comes an inability to stop talking in situations that require silence (his classroom for example).

With his fierce curiosity comes the compulsion to touch and get into absolutely everything.

With his determination to have his way, comes an argumentative streak that causes him and me to butt heads frequently.

With his boundless energy come two exhausted parents who sometimes feel it difficult to keep up with him.

He just has always lived his life at a rate of 80 mph and I suppose he always will. It's not that he does stuff to be naughty; he just has a tendency to push the limits all the time. As such, Ryan has spent a great deal of his life getting into trouble. He's just never understood when to keep a low profile.

The good thing about Ryan is that he has never expected anything less from Justin than that he be his constant companion. Even with Justin's limited conversation skills, the two of them have developed a bond between them deeper than the ocean.

Ryan was the first person Justin ever started to imitate. Slowly, Justin began to be seduced by Ryan's fantastic world of play and wanted nothing more than to be a part of it. Justin quite simply, worships the ground his older brother walks on, and in return, Ryan is a fiercely protective older brother. Heaven help the child that thinks they will ever "bully" Justin because Ryan just ain't havin' it.

Of course, in wanting to imitate his brother, Justin too has been engaging in some less than desirable behaviors. I'm afraid that in our excitement to have Justin behave in a more typical fashion that we let slide a lot of things that we probably shouldn't.

Like the time Justin told me to "shut up", and I exclaimed with quiet glee "Yeah! He's talking back". I'm sure Ryan was thinking, "I'd never get away with that" and he'd be right. Not one of my best Mommy moments.

Truth be told, I've been waiting for the day when Ryan spouts off with justified indignation, "It's not fair!", because honestly, it's not. Because of his inability to understand certain rules and concepts, Justin has, at times, been allowed to get away with things that I would never let slide with Ryan. And while I know this isn't fair, sometimes it's just not worth correcting minor infractions knowing the inevitable meltdown that will ruin Justin's day.

Therefore, as a means of making it up to Ryan, my in-laws generously bought tickets for an upcoming stage show called Walking with Dinosaurs...just for Ryan. The idea being that for one weekend, Ryan would get to sleep over at his beloved grandparents house, and go to this dinosaur show (which for Ryan would be the equivalent of seeing the Beatles), all without his little brother in tow. The intent is to have a weekend all about Ryan.

Yet when we told Ryan about the upcoming event, his reaction was unexpected.

Ryan: "Mommy, it's not fair!"
Me: "What's not fair?"
Ryan: "Justin loves dinosaurs too. Why can't he go with me? It's just not fair."

There it was. He had finally uttered the words I knew were coming, but in an entirely different context.

I guess, when all is said and done, his reaction isn't too surprising. Because with Ryan's oversized personality, comes a tremendous capacity for kindness and compassion.

It's this same generosity that makes Ryan ask all the neighborhood kids over for lunch.

It's this same thoughtfulness that makes him pick bouquets for me from my garden because he knows how much I love flowers.

It's this same caring that brought him to tears when I bought Christmas presents for a less fortunate child last year, because he couldn't bear the thought that some kids don't have as much as he does.

My benevolent Little King.

He may sometimes drive me crazy, but I am so very privileged to live in his kingdom.