Following Shadows

Ruth

2009-12-22T18:40:00.002-05:00

Last Thursday morning, my grandmother passed away at the age of 92. She would've been 93 in a couple of weeks but she was as sharp and as funny as she had ever been. Her funeral was on Sunday and close to 70 people showed up to mourn her loss. I wasn't surprised, as my grandmother was the kind of person who made a lasting impression on everyone who met her. She was simply a character in the best sense of the word. What follows is a tribute I wrote for her funeral and I'd like to share it here.

When I think about my grandmother, there isn't any significant memory that stands out in my mind. Instead, I remember a million tiny moments. Like a photo album filled with snapshots, these memories scatter across my mental landscape like a continual stream of conscious.

I find this ironic since the definition of stream of conscious is:

"unedited and unfiltered thinking; a spontaneous and continuous flow of thoughts"

Anyone who knows my Grandmother knows that she was the essence of stream of conscious thinking.

One minute talking about how "so and so" just had a baby and then in a split second talking about a hurricane in Florida. As if the two events had something to do with each other.

Those who knew her well were familiar with the swiftness with which she changed topics and we learned to keep up. So, if you'll allow me to take a page from her book, I wanted to share some of my own stream of conscious memories of grandma:

The fact that there were always cookies on the counter in the kitchen and she made sure no one left her house without eating something.

Watching Young and the Restless everyday after lunch.

Playing cards at the kitchen table and her exasperation when Grandpa would always win.

Hanging out on the front porch as neighbors and friends would always stop by to visit.

Playing tic-tac-toe and hangman with me in church to keep me occupied and entertained.

The fact that she never took herself too seriously and didn't have a self-conscious bone in her body.

Her lap…which was like sinking into a soft cloud of baby powder and Jean Nate.

The sound of big band music floating through the kitchen while she would sing and dance in her apron.

This was my grandmother.

There is a quote that says,

"Because I have loved life, I shall have no sorrow to die."

It is this thought that gives me comfort during this time, because Grandma did indeed love her life.

And with her passing, I know that the sun will now shine a little brighter.
Because to me she was like the sun. A force of nature always radiating warmth and comfort as she touched the lives of the people who revolved around her.

With that said, shine on Grandma.

You will be so very very missed.

Even Mother Warriors Need A Vacation

2009-12-12T11:55:00.003-05:00

After a self-imposed sabbatical I am back. I apologize for the absence but quite frankly I needed a break. Besides the fact that my new job renders me somewhat incoherent by day’s end, the truth is I’ve just been so sick of all things autism that I was longing for distraction.

For me, distraction came in the way of reconnecting with old friends (love Facebook!), going out to dinner with my husband (no kids allowed), and simply playing with and enjoying my kids for exactly who they are. No fretting about Ryan’s inability to sit still. No hand-wringing over Justin’s hoarding (which had disappeared but is now back with a vengeance).

It wasn’t easy, but it was definitely necessary.

Sometimes this journey feels like climbing a steep and icy slope. Then, just when you feel you have your footing, you feel yourself slip. If you’re lucky you catch yourself and recover. But sometimes you don’t. Sometimes you have to have the wherewithal to know when you’re tired and just be still.

But I’m back. I may not write as often because, honestly after working all day the last thing I want to do write. My original intent in writing was for having an outlet not an obligation.

Having said that, Christmas will be kicking into high gear soon and I’m sure I will have lots to write about. Until then, have a wonderful holiday and I’ll talk to you soon.

Raw

2009-11-03T20:24:00.002-05:00

I've started and stopped this post about half a dozen times. And everytime when I would type the words I found that the feelings behind them were just a little too raw. There was no uplifting message, there was no humor to be found. Nothing but a mother's heart breaking just a little for her child. So I put this post on the shelf for a little while. I figured I'd give my feelings time to heal just a little. Then I read a post today by Jess Wilson. Her post today was filled with so many of the same feelings I've been experiencing that I revisited this post. Because what she wrote helped me. My hope is that my post will do the same for someone else. Jess...This one's for you, Girlfriend.

I knew Friday that this was going to be a long weekend. After work on Friday we had the annual Fall Festival at Ryan's school. An event filled with among other things, a donut eating contest, face painting and pumpkin tossing. The next day we, of course had Trick or Treating and the day after that was a birthday party. The weekend was packed with "kid filled" activities and I was already tired just thinking about it. But Ryan was so exited about the planned festivities that I tried to get into the spirit.

First up, Fall Festival. Picture the scene: about 100 parents and kids and a flurry of noise and activity. I wasn't sure how Justin would do with the crowd. About 5 minutes after our arrival I had my answer. With all the activity going on around him, Justin was, for the most part, checked out. No meltdowns, no tantrums, no reaction, at all. Any attempts to try and include him in any of the fun were ignored. Any attempts to get him to say hi to anyone else were also ignored. For the most part, his attention was divided between following the lines that were painted on the gymnasium floor and looking out the window. I kept thinking to myself that his reaction to this scene would have been identical had he been the only one in the room. Around me I watched the swirl of activity. I watched the kids laughing and playing and once again I watched as my child sat oblivious to it all, on the periphery. As I scanned the room I couldn't help but notice two mothers watching Justin and whispering to each other. I wanted to believe they weren't talking about Justin, but the unmistakable looks of pity that flooded their faces as they watched him told me otherwise. It all was just a little too much to bear. The thought that these ladies (that I didn't know) would look at my precious child as someone to be pitied brought me to a depth of sadness I've not yet known. Luckily, the time passed quickly, and although Ryan could've easily spent another hour there we cut our evening short.

The next night was Halloween. We actually had high hopes for the evening. Justin had mastered saying trick or treat and loved his cowboy costume. Then, 5 minutes before it was time to leave for the big event, Justin changes his mind. He peeled off his costume and refused to put it back on. The same costume that he has been wearing for weeks the minute he comes home from school, the same costume he insists on wearing to bed...including the hat. He simply declined and refused to go trick or treating.

So while all the other neighborhood children arrived for their treats, Justin escaped into the other room scripting "Bye-bye Jack" over and over (For the record I have no idea who Jack is). Every time the bell rang I was confronted by happy "typical" children infused with the sugary joy of the holiday. Every time the bell rang I was confronted with the notion that my baby has just "missed" yet another holiday.Because indeed it's not just Halloween. He's never experienced the joy of making out a Christmas list, or the anticipation of the Easter Bunnies arrival. He has absolutely no concept of what his birthday is. To him it's just another day.

Needless to say, by the time Sunday's birthday party rolled around I was spent. Again, as I looked at the other children I couldn't help but compare how far behind Justin is. I don't want to. I want so much to only rejoice in his accomplishments and not focus on his areas of weakness. But sometimes it can't be helped. The pendulum seems to endlessly swing back and forth between feeling proud of how far he's come and fear of how far he has to go.

This weekend I realized something about myself that I haven't wanted to admit. I really have a hard time being around other kids. I wish that wasn't the case. I wish that when I hear other parents brag about how their "little Johnny" is reading at age 4 that I could say, "That's great!" and mean it. But the truth is, I don't. The truth is I am so filled with envy I can taste it in my month.

As I said, this post has no happy ending or silver lining. But it is honest. The truth is, this is never an easy road and even for those of us with children who are "mildly affected" it doesn't lessen the impact that their disability can have on the heart of a parent who wants nothing less than everything for their child.

Why?

2009-10-25T15:44:00.003-04:00

Like so many other young children, Ryan's favorite question when he was little was "Why"?

Why is the sky blue?
Why did the dinosaurs die?
Why do people believe in God?

I found that his barrage of questions was aggravating not only because of their frequency but also because it highlighted just how much actual knowledge I lacked about most things.

What am I Buddha?

However, as time passed, Ryan stopped asking so many questions and frankly has determined that he knows just about everything there is to know.

You'd think this would make me happy.

But then there's Justin.

I never knew just how much I would miss having to answer all those "why" questions until I realized that Justin wasn't asking questions at all.

The dreaded "wh" questions. The backbone to socially reciprocal conversation.

Like so many things for our kids, asking and answering questions is really hard. Truth be told, I really don't think I appreciated just how difficult and complex our language is until I had a child for which none of it came naturally. He has had to work so hard for every word, every concept, every nuance. Just when you think he has it, it's gone. It reminds me of the arcade game that Ryan loves to so much. It's the one with the "claw" that you lower down into a pile of stuffed animals, and then have to grab one without dropping it. Just when you think you've got it, it disappears.

I remember in the early days how I use to think that all of Justin's problems would be solved if only he could master talking. I automatically assumed that once the light bulb switched on that he would just "get it" and the rest would follow naturally. I had no idea that even after he had well over 300 words that he would still struggle with putting those words into a coherent and meaningful sentence.

Thankfully, little by little those sentences are coming. First came his ability to communicate his wants and needs. Then came some "what" questions. Over the summer came "where". Each step a building block for even more to come.

So, the other night, we were at the dinner table and Justin was looking disdainfully down at his plate. He is a very limited eater and was not at all happy with the cheeseburger that stared back at him. I have long since given up trying to cajole, beg, and bribe him into eating. My husband is more stubborn.

"Come on, Justin take a bite for daddy."
Silence
"Please, just take one bite."
More silence.
"Justin, please eat."
Wait for it...
"Why?"

HOLY CRAP!

I, who had no problem stuffing my face with said cheeseburger, nearly choked.

"What did you say? Did you say why? He said why!"

My husband shot me a look to say, calm down don't make him self-conscious. As if I'd scare him away like a skittish deer. But honest to God it was so cool. Now to be honest, I'm not sure if he understood what "why" meant. He wasn't waiting for a response from my husband and, no, we haven't heard it since.

But it's a start.

As an aside, last weekend at the movie theater, Ryan and I had some time to kill and they had one of those "claw" games there. With willful determination, Ryan put his money in the slot. I waited patiently while he gave it a shot, knowing it wasn’t going to happen. But then it did. With the finesse of an experienced crane operator, he grabbed his prize and out it came. Ryan is now the proud owner of a pink and purple fuzzy dolphin that he has slept with just about every night so far.

Why do people believe in God?

Because miracles happen everyday.

Where the Wild Things Are...Revisited

2009-10-23T21:44:00.003-04:00

As I wrote in a previous post, Ryan and I were anxiously awaiting the release of Where the Wild Things Are, and last weekend we were amply rewarded.

Where The Wild Things Are was a wonder.

In my last post, I wrote about the similarities between Max and Justin. The thing I was unprepared for was how much Max reminded me of myself at that age.

You see, the movie takes place against the backdrop of a little boy dealing with, among other things, the aftermath of his parent's divorce. His mother is loving but busy and frazzled with not a lot of attention to spare. She also seems to be starting up a relationship with a new man whom Max doesn’t like.

This, in a nutshell, describes a large chunk of my childhood.

Parents divorced; Mom and Dad were loving but busy; couldn’t stand Mom's new boyfriend.

As much as I predominately remember having a happy childhood, I also remember it being a tumultuous time of my life. There were so many times that I was angry. That I was confused. That I was lonely.

So many of those feelings sprang up, not just because of my parent's divorce. But because that particular event precipitated the time in my life where a lot of the innocence drained from it. That time when I realized that Daddy wasn't a super-hero and Mommy wasn’t a fairy-princess. They were just people, with their own lives and their own set of problems that didn't always include me. There's nothing scarier for a child than to realize that their parents aren't perfect and they can't always make everything all better.

But that realization does come, it always does.

It has to.

But that doesn't mean that the period between leaving childhood innocence behind (no matter what the reason) and dealing with the fear and insecurity that's found on the other side, isn't anything less than terrifying.

Sitting in the movie theater and watching the raw emotional vulnerability wash over the face of the little boy who portrayed Max, opened up a floodgate of emotions that I thought had dried up long ago. It took me back to a place that I haven't visited in a long time.

And I cried.

A lot.

I tried to hide it as best I could, because I didn't want Ryan to be scared. Isn't it funny how the harder you try to choke the tears back, the more insistent they are on flowing freely?

Not surprisingly, Ryan noticed my crying. He didn't get scared or upset at seeing me cry. Instead, he put my arm around him, snuggled close, and whispered in my ear, "I love you, Mommy".

Then he looked at me and smiled.

That pure unadulterated smile of childhood innocence.

He still has it.

Despite everything we’ve been through as a family. Despite the number of times he's been robbed of attention that has instead often gone to his brother. Despite the number of times he's been yelled at by a mother who is often frustrated and tired and he's in my line of fire. Despite the number of times he's asked the not easily answered question, "When will Justin talk to me?"

He still has it.

There is no cynicism. There is no sadness.

He is simply all things joyful.

I'm not yet ready to say good-bye to the sweetness that lives inside him right now.

I want to somehow capture it. Hold onto it. Swallow it whole.

Please don't go...I'll eat you up I love you so

I think one of the main reasons watching little Max on that big screen was so hard, was because it reminded me, in vivid detail that Ryan too will go through his growing pains. And it will be hard to watch. And it will be messy and confusing. And it will be something that I will try to help him through but will probably find my efforts futile.

Because ultimately, growing up is a journey we all have to travel alone.

Did you ever have one of those nights...

2009-10-11T20:27:00.002-04:00

...When you were sick as a dog with a cold and all you wanted to do was take a mega dose of Nyquil and go to bed early.

But then your son wakes up at 1:30 AM crying (which is unusual for him), so you run upstairs thinking, "Great. He must be sick with my cold."

So then, you find him sitting up in bed crying hysterically and without thinking (and without turning the lights on) you pick him up out of bed and place him on your hip.

But when you feel the warm "splat" against your nightgown, you realize that he doesn't have a cold, he has diarrhea, which has soaked through his pajamas and is quickly soaking through your nightgown.

So then you strip your hysterical child and place him on the toilet and pray he doesn't make a bigger mess while you run downstairs and wake your soundly sleeping husband to let him know you need reinforcements.

So then you quickly change out of your nightgown, hastily washing it in the sink (and it's 1:30 AM and although your awake you're barely coherent), while your husband goes upstairs to assess the damage in the bedroom.

And then you think, how the hell are you going to clean this child since you have stopped buying wet wipes since he's been potty trained (and you can hear the "potty training gods" snicker).

So you grab the first thing you can find which is paper towels and run back upstairs to your still hysterical child, all the while marveling at his older brother's ability to sleep through absolutely anything.

So then, you're back with hysterical child and realize that given the mess it is really easier to simply throw the pajamas out than try to wash them, which is a problem since these are his 2nd favorite pair of Elmo pajamas. Meanwhile your husband has stripped the bed and your older son is still blissfully asleep.

So then you clean hysterical child with wet paper towels, knowing full well that this would probably be much quicker if you just threw him in the shower to clean him up but know damn well that this would only push him completely over the edge so you use up half a roll trying to clean up his bum and "bits".

So now, he's clean, but still not happy because now he's naked and looking for Elmo pajamas. So you make the executive decision to trek down to the laundry room in the cold basement to find his 1st favorite pair of Elmo pajamas, which are stained with peanut butter, but given the alternative they will do just fine.

So then you get him dressed and your husband takes him downstairs to calm him down, while you spot check the 30 some odd stuffed animals on his bed to make sure that none of them were casualties of this nocturnal explosion because that would be a BIG problem (luckily they all got the all clear).

So then you go downstairs to join your husband who said he'd stay awake with now calm but wide-awake child, so that you could go back to bed. But then he's asleep within 10 minutes which really doesn't matter since said child really only wants to be on your lap, where he mercifully falls asleep 10 minutes later.

And it's now 2:00 in the morning and you have to be up in 4 hours to get ready for your new job. And you're really fucking sick with a miserable cold and the Nyquil has worn off.

So, um, yeah.

Did you ever have one of those nights?

Where the Wild Things Are

2009-10-04T18:32:00.005-04:00

And now, cried Max, "let the wild rumpus start!"

Like so many others, we are anxiously awaiting the arrival of "Where the Wild Things Are", coming soon to a theater near everyone. This has always been a bedtime favorite for the boys. For those unfamiliar with the book, the story tells the tale of a rambunctious little boy named Max, who feels misunderstood by his mother when she sends him to his room for his mischievous play. One night after getting sent to bed without supper, Max "escapes" to "where the wild things are"...an imaginary world of colorful creatures.

In this fantastical world, Max is crowned king and he and his fellow "wild things" spend their days and nights dancing and frolicking to their hearts content. In the end, however, Max longs for the love and familiarity of his family and realizes ultimately that there's no place like home.

Even though the book is obviously fiction, it is a story that resonates greatly with me. Because in Justin, I feel I have my own little Max. So very often, Justin lives in a world of his own. Somewhat above and apart from the rest of the family, he's just not always quite in step.

As much as this has often caused me times of sorrow and frustration, I can only imagine how it must feel for him. I used to think Justin would isolate himself away from us because he didn't want to be around the rest of us. Eventually I came to realize that for Justin, his bedroom offers him escape to where his "wild things" are.

You see, Justin's room is replete with no less than 30 stuffed animals (and one rabbit statuary he absconded from my garden...don't ask). They are not all his, many are his brothers. Yet if a stuffed animal makes its way into our house, you can bet that eventually it will find its way into Justin bedroom.

Often, Justin can be heard talking to his animal creatures, singing to them, laughing with them, making up elaborate scenarios of play that only he would understand.

("Take that", I say to the doctor who coldly told me, he has absolutely no imaginary play skills).

This is his "safe place" to deal with whatever scary or stressful feelings he may be experiencing.

At times, I have tried to join this wonderful world of play, only to be told, "Bye-bye". At times, I have felt oddly jealous of his wild things because they were privy to the cherished conversation that Justin is so stingy about sharing with us. Despite my feelings, this has never been a world that Justin has wanted anyone to share.

Until yesterday.

I wandered upstairs to find him, quite literally, buried beneath his menagerie. I asked him, "What are you doing?"

He answered, "You wanna play?"

WHAT?!

I steadied myself. Don't get too excited, I told myself. After all, you know he always gets pronouns wrong. He probably meant, "He wants to play".

Slowly, I turned to leave.

"Where you going?"

And there it was. There was no misunderstanding his meaning. He wanted me to stay.

And stay I did.

Together we played with his animals, making them dance and sing and rumpus like there was no tomorrow.

Because, indeed, I don't know if there will be a tomorrow.

That's the thing with autism. Sometimes these moments are a breakthrough. Sometimes these moments are fleeting. But at the very least, I spent some time playing with Justin in his world "where the wild things are" and it was intoxicating. I could see the allure of him wanting to escape to this place when he may be feeling misunderstood and perhaps doesn't even understand himself.

Here amongst the wild things he finds total acceptance.

But like all good things it had to end as real life beckons. I can only hope that more and more, Justin, like Max, will continue to long for the love and familiarity of his family and realize ultimately that there's no place like home.

And Max the king of all wild things was lonely and wanted to be where someone loved him best of all.

Then all around from far away across the world he smelled good things to eat so he gave up being king of where the wild things are.

But the wild things cried, “Oh please don’t go-We’ll eat you up-we love you so!” And Max said, “No!”

The wild things roared their terrible roars and gnashed their terrible teeth and rolled their terrible eyes and showed their terrible claws but Max stepped into his private boat and waved

good-bye.

Where the Wild Things Are

by Maurice Sendak

Ch-ch-ch-ch-changes...

2009-09-26T10:31:00.003-04:00

I know, I know...it's been awhile.

The past month has been a whirlwind of activity. We have bought a new car, got both kids back to school, got Ryan started with football, got me started at my new job, and have Michael adjusting to his new role of "house husband" (or, as he likes to be called, "Domestic Engineer").

Yes, we have indeed been busy, busy, busy, and it would be easy to say that this is the reason why I haven't written in awhile. And while this is certainly part of it, the truth of the matter is, there just hasn't been very much to write about.

That is to say, despite all the changes this month, there has been very little in the way of drama or problems to deal with. It has been (knock on wood) relatively smooth sailing.

For most people this would be a relief. For a family with a child on the spectrum, this is a miracle.

You see, kids on the autism spectrum are not really known for their great ability to go with the flow. Kicking and screaming is more often the name of the game, wth even small changes being met with frustration and fear and fighting.

And yet, all of the changes that our family have gone though these past few weeks have been met with calm and quiet serenity.

Now, that is a change that I can get behind.

Who's On First?

2009-09-10T14:59:00.002-04:00

Justin: “You hungry?"
Me: "Are you hungry, Honey?"
Justin: "Yes"
Me: "What do you want to eat?"
Justin: "Hungry!"
Me: "Yes, Honey. I know you're hungry. What do you want to eat?"
Justin: "Eat, please!"
Me (modeling): "Okay. Say, I want..."
Justin: "I want..."
Me: "What?"
Justin: "What"
Me (frustrated): "Justin, what do you want to eat?"
Justin: "I want hungry. Okay? Thank you."

Such is the life with an echolaic child.

Echolalia.

It's one of those words that most people don't know, until it affects their child. That and the word "perseverate" (the act of fixating on something or repeatedly engaging in a behavior) should be certified code words for, “Yes I have a child on the autism spectrum and, yes, I drink a lot.”

Because echolalia and perseverative behaviors can really drive a parent over the edge like few other things can. Especially when these behaviors occur in concert.

Example:
Justin: "Look, a dinosaur"
Me: “Yes, Honey. That is a dinosaur"
Justin: "Look a dinosaur"
Me: “Hmm-mm, I see it."
Justin: “Look, a dinosaur."
Me: "Okay, Justin, let's talk about something else okay?"
Pause
Justin (whispering): "A dinosaur."
Me to my husband: "Do we have any wine left?"

Obviously, speech issues in our household are a big deal. In the two years that Justin has been receiving speech therapy, he's pretty much only gaining about 6 months for every year.

Not the language explosion we've all been wishing for.

For whatever reason, it's just not clicking for him.

When people ask, I describe Justin's speech abilities as similar to an American taking a class in Japanese 101. After some time they will learn some simple rote phrases and will understand some basic questions and requests. But take that same American and plop them down in the middle of a busy street in Tokyo and they'd probably be lost. The people would talk too fast, they may talk slang, they may be doing one thing but talking about something completely unrelated, rendering the American completely and utterly lost.

This is Justin.

Lost in translation.

The irony is that when it comes to where Justin is on the autism spectrum, his symptoms are mild. He has no real fears or phobias...the exception being he doesn’t really want to eat any food that isn’t a french fry or chicken nugget.

Oh yes, food phobias abound, but that is really about it.

As far as sensory issues go, they are few and far between. He will still cover his ears to certain "unpleasant" (not necessarily loud) noises and he also insists on watching certain unfamiliar shows/movies on TV from the side. As in, hiding to the side of the TV in case the visual picture proves to be just a little too much, he can turn away quickly.

Honestly, so many of the "red flags" that put him on the spectrum in the first place have really dissipated since that time of his initial diagnosis two years ago.

Except speech.

Watching Justin's speech progress has been like watching a tree grow. Excruciatingly and, at times, heartbreakingly slow.

I really don't have any smart or funny way to end this post. Sorry, I’m just not feeling too pithy today.

The fact of the matter is that I'm really fucking worried about Justin's language skills. The leaps, when they happen, are wonderful, but the plateaus last too damn long.

I often find myself, Googling the words "speech delay", desperate to hear stories of people whose speech was severely delayed as children and still managed to grow up as fully functioning adults. This has really been the only thing that has given me hope that Justin will get to where he needs to be. I always say to myself, if it can happen for some, it can happen for him.

I do sometimes wonder if there is more that we could be doing for him, but with him receiving speech therapy nearly everyday in school, I find it hard to subject him to more therapy when he comes home. The bottom line is, he is still a little boy and he deserves some sense of normalcy.

Hopefully, with him being back at school, we'll start to see some more progress soon.

For now, I just dream of the day when I will pick him up at the end of the day and be able to ask him, "What did you do today?" and have him actually answer me.

But, I have no delusions that this day will be here anytime soon.

So, until then, I will try to “enjoy” talking about "dinosaurs". After all, I have no doubt there will be plenty more in our future.

School Daze

2009-09-08T17:09:00.002-04:00

The leaves are falling
One by one.
Summer's over
School's begun.

Today is a sad one around our household. Well, not for me and my husband. All things considered, he and I are trying hard not to dance a jig.

Because today is the last day of summer vacation.

(Insert sarcastic, mocking laughter here.)

Yes, everything is in place for tomorrow's first day of school. The supplies are bought. The backpacks and lunchboxes ready to be packed and the first day back to school outfits have been cleaned and ironed (don't be too impressed, the only other time I whip out the iron is for picture day.)

Luckily, my new job has not started yet, so I get to be here to enjoy this yearly rite of passage. I will also get the joy of embarrassing my children by taking a million pictures...but that's just gravy.

As much as I'm psyched that the kids are headed back to school it is a bittersweet event. It comes with the price tag of having to say good-bye to summer.

And I love summer.

And it's not just because I hate the long Northeast winters (but I do. I really, really do.) No, I love summer because it is a time where my senses are the most heightened. I love the way my body comes alive with the warmth of sunshine on my skin. The way my pulse instantly slows to the sound of birds singing outside my window.

But mostly, I love the silence.

I've mentioned before that we live a stones throw away from the elementary school and the junior high. During the school year, our street is a buzz of children walking to school and teachers jockeying for parking spots on our block. It can, at times, feel very invasive.

The nice thing is that I get a unique perspective from my window. Down the street, I can watch the little children with their over-sized backpacks embark on their first day of Kindergarten. I see the "big kids" in their bright yellow jackets that only the "Safety Patrol" gets to wear, so filled with importance at their responsibility. I watch across the street the "“tweens”" trying so hard to be cool yet filled with the awkwardness that only comes with adolescence. I watch the high school football players on the field across the street and how the girls giggle and whisper about who their crushes are.

I watch all of this from my window and I wonder.

I wonder how hard it will be to watch Ryan navigate this world of normal growing up, knowing that for Justin it will almost certainly be a struggle. I wonder how hard it will be on Ryan if he is popular and part of the "in" crowd and his brother isn't.

Will he be protective?

Will he be embarrassed?

Will these little children I watch, so filled with innocence, grow up to be friend or foe? Will they accept Justin as one of their own? Or will they taunt and tease?

Living here is a constant reminder of what we have to look forward to with our kids. Sometimes it's a good thing. Sometimes it's not. Sometimes thoughts like this are just a little too much to bear.

Summer vacation, brings reprieve. It allows me to exhale. It calms the chaos that is otherwise perpetually swirling in my head.

But tomorrow, school is in session again, bringing the curtain down on our blissful summer quiet. I'll pack away the summer memories along with the shorts and flip-flops.

I'll say good-bye to wandering amongst the perfume of my summer flowers.
I'll say good-bye to watching the boys chase fireflies dancing beneath the moon.
I'll say good-bye to days spent along the shores of sunny Adirondack beaches.

And I will, once again, inhale with bated breath, and wait for what is yet to come.

My Boys of Summer

2009-09-08T16:28:00.005-04:00

Please excuse our regularly scheduled post for a completely indulgent opportunity to post pictures of my kids for their grandparents to see (they are cute little buggers though, aren't they?)

Besides, in the immortal words of Ferris Bueller:

"Life moves pretty fast. You don't stop and look around once in a while, you could miss it!"

Shhhhh!

2009-09-07T09:49:00.004-04:00

There is an autism support forum I frequent fairly often. I found it very early on in the beginning of our autism spectrum journey and it has been, at times, a light in the dark when I really needed one. This board and the parents who post on it have provided more information and inspiration than any doctor has been able to do for us.

A sad commentary in itself, but that's another post entirely.

Recently, one of the parents asked the question, "Do I keep telling?" Apparently, his 5-year-old son has improved and progressed to the point where he easily passes for a neuro-typical child.

I held back on contributing on this topic, until some of the other responses came back from the other parents. It seemed, as if most of the parents whose children also could "pass for NT" were staying mum about their child's diagnosis.

Now, I'm really not one to stir the pot. When it comes to message boards, I'm a lurker by nature. Especially when I read posts that have the potential for getting contentious, I prefer to keep out of it...I don't need the drama.

But this time I didn't stay out of it.

To be fair, I understand the reasons why so many of these parents keep quiet. As many of them stated, they did it for their protection; they did it so their children wouldn't be singled out; some of older children also said they did it because they didn't feel it was their "secret" to reveal and it was up to their child to discuss it if they saw fit.

I understand these reasons and yet none of them really sat right with me.

I just kept thinking of all of the parents of children who can't pass for NT. Maybe it's just me being overly sensitive, but the unspoken message seemed to be, "Autism used to be a problem for me, but it's not anymore, so the rest of you are on your own".

I just took it as such a sad commentary, that so many of these parents have gone through hell with their kids. Whether it was holding their child's hand through ABA or biomedical treatments or other types of therapy, there's no denying that life in the family where there is a child on the spectrum can be harrowing. And yet, for those lucky enough where therapy makes a difference, so many parents seemed to prefer to just keep that information to themselves.

It made me think about the picnic I attended at Ryan's school last year. Ryan and I sat across from a little girl in his class and her mom. I asked about the matching t-shirts they were wearing that read "Alex's Lemonade Stand". I remember the look on this mother's face when she told that her daughter and fought, and survived, childhood cancer and that Alex’s Lemonade Stand is a foundation committed to raising money and awareness.

There was no look of shame or apology. Just pride. Pride that her child fought with every ounce of strength in her body to be well.

What really didn't sit right with me was when the original poster wrote that his wife had "no intention" of parading their child around as "the poster child for high functioning autism".

What I really wanted to write (and didn't for fear of getting slammed and not having my message heard at all), was:

If not your child, then whose child?

Instead, I wrote the following:

...I'm not saying that I shout my son's diagnosis from the rooftops, but I also don't keep it a secret (which it sounds like a lot of parents are doing).

I guess I just get a little tired of hearing parents bemoan the fact that the most common images of autism we have in the media are the most severe of cases. Could that be because so many parents aren't willing to "come out" and say that their child who "can practically pass for NT" is (was) even on the spectrum?

Maybe it's because my son is so young and his diagnosis is still so fresh in mind. I was scared. Really scared. I had no idea if my son would ever live a fully functional life. Thank God I found this message board, because it was like a life line to me. It gave me hope that someday (with a lot of therapy and prayers) he would be okay. I can't imagine where I'd be if parents on this board weren't willing to share their stories. I guess I'm just a little sad that it seems like many of these same parents aren't as vocal in their day to day lives.

Having said that, everyone has to do what they feel is the right thing for their particular child and their particular circumstance. Maybe if my son was older or could "pass" for NT, I would feel differently. But he can't... not yet anyway...

...as far as your wife's sentiment as to her not wanting your son to be a poster child for high functioning autism, I wonder if instead you both could see him as a poster child for "hope"?

For some parents, that could mean a world of difference.

8 Years and Counting

2009-09-02T13:39:00.002-04:00

Number 987 why I love my husband:

While watching the ridiculously perfect Angelina Jolie in Mr. and Mrs. Smith last night, my husband casually looked at the television screen and said,

"Jeez, eat a sandwich or something, would ya".

Three cheers for men who like "curvy" women!

Happy Anniversary, Baby! I love you!

Working 9 to 5

2009-08-28T18:34:00.003-04:00

Or in my case, 8:00 to 4:00.

Next week will mark the beginning of yet another new chapter in our lives...I am going back to work full-time. You're looking at the newest Senior Habilitation Coordinator for a nearby county ARC. After months of searching in this competitive job market, Mike has not been able to find another sales job. So, after a lot of discussion, we decided that I would go back to work full-time and Mike would be stay home with the kids.

Dum-de-dum-dum!

My feelings about going back to work are mixed.

First of all, I was pretty damned impressed that after a 6-year absence from the workplace, that I was able to beat out three other applicants for the job. Not bad for an old broad (did I mention that my new boss is a good 10 years younger than me...Yikes).

In all honesty, I'm also excited about the prospect of getting up in the morning and having somewhere interesting to go. Somewhere where there's grown ups to talk to all day.

I have to be perfectly honest, I have no doubt that me staying home full time for all these years has been the best choice for my kids. When I think back just 2 years ago when we had three different therapists coming to the house everyday to work with Justin, it was indeed our only choice. There's no way I could've worked full-time when he was going through that...it would have been a logistical (and emotional) nightmare.

Having said that, being a stay at home parent is tough! Anybody who tells you otherwise has never tried it.

When I was in the hospital after giving birth to Ryan, I remember lying in my bed in my groovy Percodan state of mind and thought how great it was going to be to be at home with my new baby. Growing up a latch-key kid myself, I dreamed of doing things with my kids that I wished I'd done more of with my mom. Things like arts and crafts projects, baking chocolate chip cookies, making snowmen on a brisk winter's day.

And we did do all those things. Except that after making your 845th craft project you realize that your sick of cleaning up glue and paint from every conceivable surface (don't even get me started on glitter...I've seriously considered starting a petition to outlaw it altogether). Baking cookies is fun until you've eaten so many batches that you can see every bite manifest themselves as cellulite dimples on your ass. As for fun in the snow, you start to realize that the 30 minutes it takes to bundle your wee ones in their winter paraphenalia is simply not worth the effort when they complain after being outside for 5 minutes, "I'm cold. I want to go inside".

There are also unexpected challenges to being a stay at home parent. The boredom and bouts of loneliness were feelings that I was not prepared for.

And yet, I am loath to leave this life behind.

Why?

Because I've not missed a single "first" my kids have had. First words, first steps, first smiles. I was there for every single one of them.

Because for every frustrating moment, there have also been silly hilarious moments of playing with my kids that have made me laugh every single day.

Because there really is nothing better than waking up with your kids on a snowy morning and hearing the radio announce a “snow day”.

Because of the countless tiny vignettes that play like snapshots in my head and have comprised the past 6 years of my life.

It’s like that old saying, “I want to go…I just don’t want to leave.”

And, the truth is, I really am ready to turn this all over to my very capable husband (ready or not, Honey).

But I know a part of me will miss it forever.

Let's Hear It For the Ladies

2009-08-21T09:33:00.002-04:00

I love men.

As a matter of fact, I have been blessed to have some truly exceptional men in my life.

My husband, my father, my grandfather...

and let me not forget the two little men in training I have who are currently beating the snot out of each other with their respective light sabers.

Yes, men are awesome.

But then there's women.

Mothers, sisters, friends.

What is it that connects us on such a spiritual level?

What is it that intuitively knows when a "sistah" is in trouble and needs...

a shoulder to cry on?

someone to talk to at 2 AM, no questions asked?

a good bottle of wine and a chick flick?

an ally, a comrade in arms, a cheerleader, a champion?

I don't know where it comes from, this magical power of female friendship.

I don't know why it is,

I'm just so glad it is.

With that in mind, a good friend emailed me the following and I thought I'd share.

Sisters

A young wife sat on a sofa on a hot humid day, drinking iced tea and visiting with her Mother. As they talked about life, about marriage, about the responsibilities of life and the obligations of adulthood, the mother clinked the ice cubes in her glass thoughtfully and turned a clear, sober glance upon her daughter.

"Don't forget your Sisters," she advised, swirling the tealeaves to the bottom of her glass.
"They'll be more important as you get older. No matter how much you love your husband, no matter how much you love the children you may have, you are still going to need Sisters. Remember to go places with them now and then; do things with them. Remember that 'Sisters' means ALL the women...your girlfriends, your daughters, and all your other women relatives too. You will need other women. Women always do."

What a funny piece of advice, the young woman thought. Haven't I just gotten married? Haven't I just joined the couple-world?

I am now a married woman, for goodness sake! A grownup! Surely, my husband and the family we may start will be all I need to make my life worthwhile!

Nevertheless, she listened to her Mother. She kept contact with her Sisters and made more women friends each year. As the years tumbled by, one after another, she gradually came to understand that her Mom really knew what she was talking about.

As time and nature work their changes and their mysteries upon a woman, Sisters are the mainstays of her life.

After more than 50 years of living in this world, here is what I have learned:

Time passes.
Life happens.
Distance separates.
Children grow up.
Jobs come and go.
Love waxes and wanes.
Men don't do what they're supposed to do.
Hearts break.
Parents die.
Colleagues forget favors.
Careers end.

BUT...

Sisters are there, no matter how much time and how many miles are between you. A girl friend is never farther away than needing her can reach.

When you have to walk that lonesome valley and you have to walk it by yourself, the women in your life will be on the valley's rim, cheering you on, praying for you, pulling for you, intervening onyour behalf, and waiting with open arms at the valley's end.

Sometimes, they will even break the rules and walk beside you...

Or come in and carry you out.

Girlfriends, daughters, granddaughters, daughters-in-law, sisters, sisters-in-law, Mothers, Grandmothers, aunties, nieces, cousins, and extended family, all bless our life!

The world wouldn't be the same without women...

and neither would I.

Coming out...

2009-08-14T10:44:00.004-04:00

...of his shell, that is.

Justin has never been anti-social exactly. It's just that entering into Justin's world has always been a bit like trying to get into Studio 54. Some people are allowed past the velvet ropes and embraced with enthusiasm and affection.

Yet others don't quite make the cut.

Like Steve Rubell working the door, he just decides that certain people lack the right vibe and they are summarily dismissed and quite actively ignored.

While Mike, Ryan and I have always been privy to the inner sanctum of Justin's private club, there are, sadly, few other members.

Until recently.

Lately a subtle shift has been taking place and Justin has been reaching out more and more.

There was the little girl he approached at the beach. He grabbed her hand and said "hi". Then the two of them played in the water for 20 minutes. That's right. They played. As in, "together". For 20 minutes!

Need I say more?

There's his recent desire to be outside with the "Neighborhood Gang" (aka...the 3 to 6 kids who perpetually populate our neighboring backyards). His awareness and persistence in trying to keep up with this rowdy bunch has been nothing short of wonderful.

There was the recent visit with my younger brother (20 years my junior). Watching Justin tenuously allow his young uncle into his space, stirred feelings of tenderness in me that I really don't have the words describe.

The point is, with each week that passes, Justin is growing and developing more and more. Before our very eyes, he is morphing from baby to little boy. You'd think that after all this time I'd finally be ready for this metamorphous.

And I am.

Kind of.

Because it is a little disconcerting. In so many ways he is still very “baby-like”. Then out of nowhere, he will do something so completely unexpected. So completely age appropriate. And I’m completely thrown off kilter. It’s just hard sometimes to know when to push and when to protect, or over-protect, as the case may be.

One of my favorite sayings is how, as parents, our job is to give our children “roots and wings”.

Just keep flying, my little bird, and I promise I’ll be here to catch you if you fall.

Blink of an Eye

2009-08-01T17:27:00.002-04:00

I am not old but mellow like good wine. ~ Stephen Phillips

Forty isn't old, if you're a tree ~ Anonymous

40

The big 4-0

I am in my 40's

Don't mind me. I just keep hoping that if I repeat this enough times that next week, on my actual birthday, I won't wake up, hide under the covers and cry.

Yes, it is true. This Wednesday marks the beginning of a new decade for me. And while I'm happy to say I entered my 30s with a positive, devil-may care attitude, turning 40 is an altogether different animal.

And not for the reasons one may think.

For example, it’s not because I "look 40". In all modesty, I think I can say that, aesthetically speaking, the years have been kind...although my emerging crows feet and post-partum belly (can you still call it that when your "baby" is 4?") could happily take a hike any day now.

No there won't be any Botox, hair extensions or dressing wildly inappropriately for my age (Hello...calling all Housewives of NYC, NJ, et al.) to make me feel better this birthday.
Truth be told, if they made a reality series about my life it would probably be called the Housewife of Mayberry, but I digress.

The reason for my uneasiness this birthday comes from feeling that life is going by entirely too fast. It's like one minute I was 19 with a whole life ahead of me. A life filled with starting a career, getting married, buying a house, having children. A life filled with beginnings.

Then I closed my eyes and blinked.

And when I opened them again, all those beginnings were behind me. So, now I’m left wondering, what lays ahead?

Endings?

It's as if the last 40 years have been a roller coaster ride. Slowly I've ascended the steep hill with butterflies of anticipation about what was to come. Now, I feel like my birthday will mark a rapid descent for which I am altogether unprepared.

If only life came with an emergency brake. Or, better yet, a rewind button.

I'm just so not ready for this chapter of my life to end and the next one to begin.

And yet I know it already has.

I see it in my mom with her twinkling eyes and her unmistakable growing resemblance to my grandfather.

I see it in my grandparents who, after years in a nursing home, are barely recognizable from the vibrant couple they once were (Alzheimer’s is a bitch of a thing).

I see it in my children as they try more and more to assert their growing independence.

I see it in the grey hairs that pepper my husband's head (I've got them too but years of coloring my hair have helped me stay in denial).

All of these changes seem to be taking place and yet, I don't feel any different.

I still feel like that 19-year-old girl with her whole life ahead of her.

Only, it isn't.

I've been thinking a lot about Kelly Corrigan's book the Middle Place. For those unfamiliar, it's her memoir of how a cancer diagnosis takes her past that "middle place" in life, when you’re a parent and a child at the same time, and becoming an authentic adult. Here's one of my favorite lines from her book:

"Even when all the paperwork — a marriage license, a notarized deed, two birth certificates, and seven years of tax returns — clearly indicates you’re an adult, but all the same, there you are, clutching the phone and thanking God that you’re still somebody’s daughter."

Obviously, I would never compare turning 40 to a cancer diagnosis, but that line still really resonates with me. I'm quite happy in my "middle place". I wrap it around me like a security blanket. I'm just not sure I'm ready to leave that place behind.

So, for all of those who love me, please be patient with me. I may pout a little bit on the "big day", but I'll get over it and, more importantly, over myself.

I may even learn to embrace being a full-blown adult. Maybe.

Here Endeth the Lesson

2009-07-26T19:37:00.007-04:00

Well, we are back from our Maine vacation and after a week away, I have learned the following things…

That portable DVD players can be a godsend for long car rides.

That throwing rocks in the ocean and outrunning waves can provide hours of entertainment.

That if it weren't for french fries and potato chips, Justin probably would've starved on this trip.

That few things rival the beauty of the sun setting over the Atlantic.

That the ocean air does frightening things to my hair.

That a one-bedroom condominium looks a lot bigger on-line than in actuality.

That you don't so much care about your tiny digs when you’re just a few steps from the beach.

That Justin absolutely adores the ocean.

That places that force you to leave through the gift shop (Yeah, you York Zoo), should be avoided at all costs.

That Justin will always have "poop problems" on vacation...last time diarrhea this time constipation (sorry...TMI?)

That sometimes activities that should be so easy, can be painfully difficult.

That activities where you foresee challenges can sometimes, miraculously, go off without a hitch.

That a little bit of rain never stopped my kids from having fun outside.

That it's still hard to see Justin next to other kids his age and wonder if he'll ever catch up.

That I am completely in awe of Ryan's ability to make friends absolutely everywhere we go.

That when Ryan plays with his new found "posse" on the beach, it will still sting to see Justin forgotten on the sidelines.

That this will probably always bother me more than it will bothers him.

That where other kids may be afraid to get their clothes wet or dirty, my kids don't seem to share that feeling.

That a bunch of crayons and menus you can color can make the difference between a good restaurant experience and a bad one.

That you should always bring the stroller even if you think you won't need it.

That the fancy LL Bean water shoes will give Justin blisters on the back of his feet rendering him unable to walk comfortably in shoes (see the above).

That a week away is a very long time to be away from home...for all of us.

That I will rarely have a camera (with working batteries) at the perfect photo opportunity.

That when it comes to family vacations, there will always be highs, there will always be lows, but most importantly, there will always be memories.

Maine Revisited

2009-07-17T13:36:00.002-04:00

Tomorrow morning we begin our vacation to one of our favorite places, Ogunquit, Maine. Maine is a very special place to us. It was the first place Mike and vacationed as boyfriend/girlfriend; it's where we spent a fabulous honeymoon; it's where we went for our first anniversary; and it's the place where Ryan has developed an absolute love affair with lobster and chowda.

Yet, instead of excitedly packing for our weeklong excursion, I find myself a tad bit ambivalent. You see, although Mike and I went to Maine last year a deux, the kids have not been back since the time right after Justin's diagnosis.

I'm trying so hard not to get my hopes up that Justin will be excited to spend all his days on the beach by the ocean. I'm also trying equally hard not to pessimistically expect the worst, by taking him away from the security of his home and everyday routine.

It's not easy.

I've never been very good at the "wait and see" approach. I am much more the "what can I control" type.

However, as I sit here and type, its hard not acknowledge all the things that have occurred in the two years since our last family trip.

Two years ago...

Justin wasn't talking...at all.

Ryan wasn't reading.

Justin's eye contact was sketchy.

Ryan couldn't swim.

Justin preferred to be alone.

Ryan couldn't ride a bike.

Justin wasn't potty trained.

Ryan couldn't snap, whistle or blow a bubble.

Justin spent most of his days in a fog that was hard to penetrate.

Two years later...

Justin is able to say hundreds of words and can even manage some 3-4 word sentences from time to time.

Ryan can read (although he doesn't like to) and recently showed off his writing abilities by writing RUSH (my musician husband's favorite band) on the windowsill of my kitchen...AARGH!!!

Justin almost always acknowledges when his name is called and has recently ventured into the world of joint attention (i.e. pointing while saying, “Hey, look!”)

Ryan can swim like a fish and has even been diving.

Justin still likes his "alone time" (don't we all?), but is happiest when playing with his big brother.

Ryan, just this week has really mastered his two-wheeler. The look of joyful pride when he was able to "push off" by himself and stay up, is a picture that will be indelibly burned on my brain.

Justin is not only potty trained but also stays completely dry during the night. Can I get an Amen!

Ryan can indeed snap, whistle and blow bubbles, oftentimes to the extreme annoyance of his parents.

Justin's "foggy" days are rare. He actually spends a lot more energy trying to be the center of attention.

Yes, it's amazing the changes that can occur in a scant two years time. Therefore, I promise to remind myself of that if this vacation turns out to be less than stellar for Justin.

After all, just think where he'll be two years from now.

Happy Birthday Baby Boy!

2009-07-14T11:24:00.004-04:00

My Wish

I hope that the days come easy and the moments pass slow

And each road leads you where you want to go

And if you're faced with a choice, and you have to choose

I hope you choose the one that means the most to you.

And if one door opens to another door closed

I hope you keep on walkin' till you find the window

If it's cold outside, show the world the warmth of your smile

But more than anything, more than anything

My wish, for you, is that this life becomes all that you want it to

Your dreams stay big, and your worries stay small

You never need to carry more than you can hold

And while you're out there getting where you're getting to

I hope you know somebody loves you, and wants the same things too

Yeah, this, is my wish.

-Rascal Flats

Happy 4th birthday precious boy. Your mommy loves you very much!

Bravery

2009-07-11T17:01:00.012-04:00

I'll love you forever.

I'll like you for always.

As long as I'm living...

My baby you'll be.

Love You Forever...Robert Munsch

In the past few weeks, my children have shown me what true bravery is all about. For starters, Ryan started day camp last week at the local YMCA. As excited as he was in theory about camp starting I could feel his enthusiasm wane as we walked into the building. All around us, kids were a buzz, drunk with the freedom of being done with school and starting summer vacation.

In situations like this, where chaos reigns supreme, I tend to automatically shut down. I find the combination of noise and movement from too many people in a confined space altogether overwhelming for my senses. As I could feel myself run for cover in the inner sanctum of my own head, I glanced down at Ryan. He too looked to be a bit stunned by all the commotion run amok. Yet, instead of clinging to my leg or holding onto my hand, he looked up at me and said, "It's okay, Mommy. You can go now."

I always marvel at Ryan's willingness to try anything new, completely undeterred. Such a far cry from what I was like as a child, or even like now as an adult. Part of me wanted to take him out of there, afraid he'd be gobbled up by the fray of "big" kids. But, like getting into a cold pool, he took a deep breath and just jumped. My brave little knight.

The next honorable mention for bravery goes to Justin. Justin is a child who clings to certain routines. For instance when I drop him off at school, he unpacks his lunch from his little Elmo book bag, puts said bag in his assigned cubby, then says, "Good-bye" to me, at which point, I am to go...immediately. If I stay even for a few seconds to chat with his teacher he quickly becomes unglued.

Bedtime is a similar routine. We read the same story (Baby Einstein's Violet's House, if your interested), we say prayers, then he says, "Good-night" at which point I am to turn off the light and, once again, leave immediately. Well, a few nights ago I thought I'd shake things up a bit. As we read Violet's house, I thought t might be a good time to work on "where" questions. He's been doing so well with "what" and "who" that I thought we could try something new. As we read each page, I'd ask, Justin "Where is Violet?" Knowing he wouldn't know the answer, I'd model it for him (i.e. "She's in the kitchen".) I did this for a couple of pages until I realized that his huge brown eyes were welling up with tears.

He looked at me with such sadness on his face it sucked the breath right out of me. He quietly closed the book and said, "The end."

Now, I've seen him get angry when I've tried to teach him things and I've seen him get really annoyed with a look that says, "Just leave me alone". But this was altogether different. This was a look that conveyed, "I know I should know the answer, but I don't".

This was a look of...recognition.

A look that I was so completely unprepared for. I tried to scoop him up in my arms to comfort him, but he fended me off, too desperate now for the homeostasis of his normal routine. He cuddled himself under the covers, amidst the 28 or so stuffed animals he insists on sleeping with. Again, I wanted to whisk him out of his bed and cover him with kisses. To tell him how proud I was of him even if he didn't know the answer to the questions. I knew he wouldn't understand the meaning of my words, but I couldn't bear the thought that he might think he had disappointed me in some way.

I wanted to say so much to him. But, with silent tears coming down his cheeks, he looked at me bravely and said, "good night".

With that, I knew I had been dismissed. My services were no longer needed. He just wanted me to leave so he could find solitary comfort in his stuffed animal family and cry himself to sleep.

I've been truly haunted by these two images of my children this week. Completely unsettled at the notion that as my children get older, I won't always be able to protect them as much as my maternal instinct craves. Some battles they are simply going to have to fight on their own. It was so much easier when they were babies. I could just stick them in the Baby Bjorn and snarl at anyone who came too close. But as Ryan is always so quick to point out, they aren't babies anymore.

And yet, they are.

They are my babies. Age really has nothing to do with it. I'm sure I'll feel this way when they're in their 30's.

I just wonder, as a mother, do you ever really forget that feeling of fierce protectiveness you have for your children. What kind of courage must it take to let go of the fear. Fear that they'll get hurt. Fear that they'll have their hearts broken. Fear of not having control over everything that touches your precious child's world.

I know this is a courage I don’t possess yet.

But at least with my boys, I have some pretty good role models when the time does come to let go.

Not Exactly My Moment of Zen

2009-06-30T17:27:00.002-04:00

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)

2009-06-25T15:44:00.002-04:00

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)

2009-06-24T16:13:00.002-04:00

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?

2009-06-23T16:50:00.001-04:00

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

2009-06-22T10:23:00.002-04:00

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....

2009-06-21T18:48:00.002-04:00

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

2009-06-09T21:01:00.003-04:00

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.

The Many Faces of Autism

2009-05-31T09:37:00.003-04:00

The other night while flipping through the channels, I stumbled upon the movie Rainman. For anyone living under a rock who is unfamiliar with the movie, Dustin Hoffman portrays Raymond; an autistic man who gets "sprung" from an institution by his anti-hero brother played by Tom Cruise.

While watching this movie I was very aware of the fact that when many people think of what autism looks like, they think of Raymond. And, to be honest, sometimes autism does look just like this movie character. Raymond is echolaic, rigid about routines, and shuns most attempts at affection. These can all be very real characteristics of autism.

But not always.

Not every person is as severely affected as Raymond was. Sometimes autism walks amongst us everyday, completely unrecognized.

Autism can be

The "cry-baby" that always cries at the "Mommy and Me" group because they can't handle the confusion of being in a room of 20 other toddlers.

Autism can be

The "scatterbrain" child who never seems to pay attention because he cannot focus on anything other than the hum of the fluorescent lights in his classroom.

Autism can be

The "nerd" who is made fun of for wearing Velcro shoes, because at age 12 she still has not mastered the fine motor coordination to tie her own shoelaces.

Autism can be

The "weirdo" who stares at you just a little too long, because years of socialization training have taught him to make eye contact when communicating, but not necessarily when to look away.

Autism can be

The "bully" who laughs when another child falls down and hurts themselves because they're not quite sure how to show empathy.

Autism can be

The "brat" who tantrums in the middle of a grocery store because the commotion and confusion they encounter in such a setting are simply more than their brains can handle and regulate.

Autism can be

The "stupid" kid who runs across the street, with no fear of traffic, because the compulsion to run, far outweighs his comprehension of danger.

Cry-Baby...Scatterbrain...Nerd...Weirdo...Bully...Brat...Stupid.

We have all known kids who have gotten these labels slapped on them.

We've rolled our eyes when we've seen them act out at stores, at school, or the playground.

We may have even indulged in a bit of, "If I were that kid’s parent they wouldn't act like that!"

I have endured the disapproving stares from other moms at the playground when Justin has melted down for one reason or another.

As a parent you want to scream, "He's really not a brat...he's just on the autism spectrum."

But of course, you don't. Moreover, if you did, I wonder if you would be believed.

Because when many people think of autism, they don't think of perfectly normal looking children, who have reciprocal conversations and like to play with other kids.

They think of Rainman.

They think of severely affected individuals who cannot function in the real world. They think of people with obvious impairments that need our kindness and our protection.

But there's a whole other end to the spectrum that often goes undetected by the general public...until they do something socially unacceptable that makes it clear they're just a little "off". But because they look so "normal", they get branded as nerds, weirdos, brats, etc.

Not people worthy of kindness and protection, or more importantly respect.

That's a problem.

It's a problem because until the population at large starts to understand that autism has many faces, people like Dennis Leary will continue to make asinine assertions such as:

"There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can't compete academically, so they throw money into the happy laps of shrinks . . . to get back diagnoses that help explain away the deficiencies of their junior morons. I don't give a [bleep] what these crackerjack whack jobs tell you - your kid is NOT autistic. He's just stupid. Or lazy. Or both"

Then, of course, there's the equally hateful quote from the equally asinine Michael Savage who states that autism is:

"A fraud, a racket. ... In 99 percent of the cases, it's a brat who hasn't been told to cut the act out."

The fury I feel when I read such statements can only be matched by the sadness I feel when I realize that many people agree with these ignorant assholes.

To them, autism = Rainman. Any other less severe incarnation just doesn't compute.

And while I in no way mean to diminish the fact that some people are on the severe end of the autism spectrum, I hope to bring some awareness to the fact that more and more we're seeing autism wrapped up in a very ordinary package. These children walk amongst us everyday in very ordinary circumstances.

And with 1 child in the US being diagnosed with autism every 20 minutes, we had better start broadening our definition as to what is socially acceptable pretty damn quick.

This Magic Moment

2009-05-25T07:47:00.003-04:00

I love to garden....in theory. Don't get me wrong. I love to look out my front window and enjoy the way my flower beds look when they are freshly weeded and mulched and bursting with color after a long grey winter. I just find that the hardest part, as with so many other projects, is just getting started. But seeing as our house is directly across the street from the local junior high and just around the corner from my older son's elementary school, I was feeling the tinge of embarrassment that comes from everyone in town noticing that our property resembled something akin to the Munsters house.

So, with shovel and hoe in hand, I set out to tend to the weed patch...er, I mean flower garden. A task made all the more difficult as Justin had the day off from his school and was my "helper" on hand.

Luckily, there's something to be said for perseverative behaviors. Justin has always had a love of water-play and I found that I could keep him occupied by filling the big watering can and having him water the flowers. At one point, however, I filled the can a little too much.

Justin: "It's stuck!" (translation: it's too heavy to lift off the ground).
Me: "Is it too heavy?"
Justin: "Wanna help?"
Me: "Sure. Let me pour some water out for you"
Justin: "Oh Thanks!"
Me: "You're welcome."

It was at some point during this that I realized I was actually having a conversation with my son. Nothing fancy-shmancy, but indeed a genuine reciprocal and appropriate exchange of words with my highly echolaic son.

Cool.

Truth be told, we've been having more and more of these "magic moments". Moments where he'll look at me and say, "Look!", while pointing at something. Moments where he'll initiate games (if you consider wrestling a game) with his brother. Moments where he'll see his brother and the neighborhood kids playing in the backyard and he'll get his shoes on and say "Outside?" Moments where I'll catch him staring at me, studying my face, almost like he's seeing me for the very first time, and he smiles.

The thing is, when you tell another mother how awful it is to not have your child respond to you, I think they get it. They understand how heartbreaking it is to never have your precious child look at you and call you "Mommy". But I don't think that anybody can truly comprehend the joy that comes when these moments finally happen. It feel like nothing short of a miracle. Because you never forget how hard won these moments were. You never forget the months of speech therapy just to get him to say the word "cracker". You never forget the PECS, and the sign language, and the ABA, and the reinforcers, and the three steps forward and two steps back. You never forget the moments where your faith wavered and you thought, maybe he'll never talk.

And then he does. And it's magic.

Beautiful Boy

2009-05-15T10:42:00.011-04:00

Before you go to sleep

Say a little prayer

Every day in every way

It's getting better and better

Beautiful Beautiful, beautiful....
Beautiful Boy

Out on the ocean sailing away

I can hardly wait

To see you to come of age

But I guess we'll both

Just have to be patient

Yes it's a long way to go

But in the meantime......

John Lennon

Yesterday, I did something that I usually don't do. I cleaned the house. I picked up the toys and assorted pieces of clothing that seem to perpetually litter our living room. I also put away the dozen or so DVDs that were strewn about the TV cabinet. That's when I saw it. It being the home movies we had converted from VHS to DVD.

I tried to resist the temptation to watch. Right after Justin was diagnosed I would watch this DVD over and over, using Ryan as a developmental yardstick to measure where Justin "should be". I stopped watching when I realized how torturous it was to see just how far behind Justin really was compared to his older brother.

And yet, here I was, alone in the house.....

I put the DVD in the player and watched.

And then I cried.

And when I say cried I mean big sloppy, wreak your make-up, catch your breath sobbing.

In the past, these movies always made me sad because it was always a reminder of how delayed Justin was. But, yesterday it made me sad for a different reason. Because as I sat and watched Justin in his first year and a half of life, I see a beautiful, happy and healthy boy. Completely "typical" with a face that was like sunshine. Then as the months go on, you can see the light slowly go out of his face. You can hear me calling from behind the video camera, "Justin, Justin. Look at mommy, Justin" only to be ignored.

As I watched, the thought that spun around my head was, "where the hell did my baby go?" Because he was there. He really was. So perfect and poised to develop into a typical toddler. Then, instead of leaping forward, he slowly slipped down the slope.

I was completely overwhelmed by just how much I missed that sweet happy baby. How much I missed our life when autism wasn't a word in my daily lexicon. And I wept.

I think what surprises me is just how raw it still is. Even after nearly two years of living with this diagnosis, it's still so tender, like a sprained ankle that never quite healed properly.

I took the DVD out and put it away. I know a day will come when I'll be able to watch it and not feel sad. I just wish I knew when that day would come.

The Joy of Motherhood

2009-05-11T14:39:00.002-04:00

So, yesterday was Mother's Day. A day when mother's are to be given special treatment for all the wonderful things they do throughout the rest of the year.

Yeah...I think my kids missed the memo.

My mother's day morning was spent trying to avoid my kids as they ran throughout the house chasing each other, wrestling with each other, yelling at each other, and doing their best imitation of the Lost Boys from Peter Pan. Ahhh, such bliss.

Honestly, the noise and the commotion was more than I could take, so I quietly escaped to my room to watch the Food Network and I let my husband deal with the restless natives just outside my door. Not exactly a great way to kick off Mother's Day.

I remember when I was pregnant with Ryan and how I always imagined motherhood would be. I'd fantasize about being the one they would always show on TV. You know the one in the commercials dressed in a white robe holding her sleeping cherub. The picture of serenity filmed through that gauzy soft Cybil Shepherd from Moonlighting lens. Then there was the older mom picking her kids up from school, always stylish and showered as she dashed off to some PTA event. These moms were beautiful. These moms were put together. These moms, as it turned out, were so not me.

My dreams of newborn baby bliss were dashed when both my kids suffered from colic for their first few months of life. As for being the stylish PTA mom, I'm still working on the just being showered part. Yes, I must admit that I sometimes feel as though I have somehow fallen short in my endeavors as a mom. Moreover, there is good reason to think so. I am a "bad" mom because:

I have let my children go days without bathing them and they start to resemble a member of the cast of Oliver Twist (Please Sir, can I have a bath).

I have pretended not to notice when they have picked up some piece of cookie that fell on the floor last week (I also don't clean my floors nearly enough).

I've let Justin get away with things I would never let Ryan do, with the feeble excuse that, "Justin doesn't understand like you do", when what I really mean is, "Justin doesn't understand and I'm not in the mood to turn this into a "teachable moment".

I have eaten yummy treats in the kitchen when my kids were occupied, because I just didn't feel like sharing.

I have given both my kids a nip of melatonin, not because they needed to go to sleep, but because I needed them to go to sleep.

I yell...a lot. Sometimes I even spank. However, the guilt of such acts usually renders me so guilty that I shower affection on them for the days that follow.

Therefore, it is true. I am highly flawed. But sometimes I do get it right. I get it right when:

I read Skippyjon Jones for the 100th time, complete with silly voices.

I always get my kids the Happy Meal because even though I know half the meal will go uneaten, I remember how cool it was to get the toy in the box.

Ryan scores a goal in soccer for the other team, and I still yell "good effort" and mean it.

Justin "escapes" upstairs to his own little world, and I still go up and pull him out, even when I'd rather be relaxing in my chair with a glass of wine and a House re-run.

Ryan asks for "a cuddle" and I rarely say no. And when Justin follows suit and climbs onto my already crowded lap, I know there's no better place to be than beneath that tangle of feet and elbows.

So when all is said and done, I guess I will feel good about being the highly flawed mother that I am, because at least I know that sometimes I do still have my moments.

Happy Mother's Day

2009-05-10T08:23:00.001-04:00

It's been said that "good writers borrow from other writers, while great writers steal from them outright". With that spirit in mind, I'd like to share with you something this Mother's Day that I wish I had written.

MOTHERHOOD... IT WILL CHANGE YOUR LIFE

Time is running out for my friend.

We are sitting at lunch when she casually
mentions that she and her husband are thinking
of "starting a family." What she means is that her
biological clock has begun its countdown and she
is considering the prospect of motherhood.

"We're taking a survey," she says, half jokingly.
"Do you think I should have a baby?"

"It will change your life," I say carefully.

"I know," she says. "No more sleeping in on Saturdays,
no more spontaneous vacations..."

But that is not what I mean at all.

I look at my friend, trying to decide what to tell her.
I want her to know what she will never learn in childbirth
classes. I want to tell her that the physical wounds of
childbirth heal, but that becoming a mother will leave
her with an emotional wound so raw that she will be forever
vulnerable.

I consider warning her that she will never read
a newspaper again without asking "What if that had been my
child?" That every plane crash, every fire will haunt her.
That when she sees pictures of starving children, she will
look at the mothers and wonder if anything could be worse
than watching your child die.

I look at her carefully manicured nails and stylish suit
and think she should know that no matter how sophisticated
she is, becoming a mother will immediately reduce her to the
primitive level. That a slightly urgent call of "Mom!" will
cause her to drop her best crystal without a moment's
hesitation.

I feel I should warn her that no matter how many years she
has invested in her career, she will be professionally
derailed by motherhood. She might successfully arrange for
child care, but one day she will be waiting to go into an
important business meeting, and she will think about her
baby's sweet smell. She will have to use every ounce of
discipline to keep from running home, just to make sure he
is all right.

I want my friend to know that everyday routine decisions
will no longer be routine. That a visit to Mc Donald's and a
five year old boy's desire to go to the men's room rather
than the women's room will become a major dilemma. That
right there, in the midst of clattering trays and screaming
children, issues of independence and gender identity will be
weighed against the prospect that danger may be lurking in
the rest room.

I want her to know that however decisive she may be at the
office, she will second-guess herself constantly as a mother.
Looking at my attractive friend, I want to assure her that
eventually she will shed the pounds of pregnancy, but will
never feel the same about herself. That her life, now so
important, will be of less value to her once she has a child.
That she would give it up in a moment to save her offspring,
but will also begin to hope for more years, not so much to
accomplish her own dreams, but to watch her child accomplish his.

I want her to know that a cesarean scar or stretch marks
will become badges of honor.

My friend's relationship with her husband will change, but
not in the ways she thinks. I wish she could understand how
much more you can love a man who is always careful to powder
the baby or who never hesitates to play with his son. I think
she should know that she will fall in love with her husband
again for reasons she would never have imagined.

I wish my modern friend could sense the bond she will feel
with other women throughout history who have tried desperately
to stop war and prejudice and drunk driving.

I want to describe to my friend the exhilaration of seeing
your son learn to hit a baseball. I want to capture for her
the laugh of a baby who is touching the soft fur of a dog for
the first time. I want her to taste the joy that is so real
that it hurts.

My friend's quizzical look makes me realize that tears have
formed in my eyes.

"You'll never regret it," I say finally.

by Dale Hanson Bourke
Chicken Soup for the Woman's Soul

Sweet Music

2009-05-09T08:59:00.001-04:00

So, last week, I was busy doing dishes while Ryan, my oldest, was busy coloring at the table. A rare moment of quiet in my house and I was thankful for the reprieve. Then, much to my surprise, a familiar sound broke the silence. It was the unmistakable sound of pee-pee hitting the toilet.

Now, with Ryan at the table and my husband on his computer, it took a moment for it to register that this sound could only be coming from Justin.

Oh my God!

He's going potty by himself.

After nearly 9 months of potty training, Justin went potty by himself. After 9 months of PECS, and reinforcers, and Potty-Time with Elmo, and cleaning up messes, and stops and starts, and Screaming (his), and tears (mine).......Justin quietly went into the bathroom and went potty all by himself.

I have to say that one of the benefits of being the parent of a child with special needs is that you never- ever- take anything for granted. Even the smallest of accomplishments are worthy of celebration which means that the "milestone" accomplishments are worthy of a parade.

The sound of that tinkle was like music to my ears. The only thing that has topped it so far was a few months ago when he started calling me "mommy" once again. Not echolaically and not because I told him to "say mommy". But affectionately, excitedly and genuinely calling my name. That was more than music to my ears. That was a symphony worthy of a standing ovation.

Following Shadows

2009-05-07T12:36:00.001-04:00

"That's so cute; he's trying to follow his shadow". This harmless comment came from an older woman addressing my 2-year-old son Justin. We were on vacation in Maine and Justin was indeed following his shadow along the main walkway by the entrance of the beach. What this woman did not know, was that Justin had been doing this for well over half an hour. He was oblivious to the vast and thunderous ocean before him, oblivious of the people who were nearly tripping over him trying to get past him. Down by the water's edge, my oldest son and my husband were engaged in the serious work of collecting crabs, shells and other sandy treasures. But Justin's only focus was his shadow. Possibly, because he was fascinated by the way it danced when he did. Possibly, because the beach presented such an onslaught to his senses that he desperately needed a distraction. I smiled weakly at this woman as she passed us by. I know she meant no harm with her remark. But inside, I crumbled just a little. I crumbled because just a month earlier my husband and I sat in a doctor's office and received the news that Justin was on the autism spectrum.

To say this news came as a shock would be an understatement of vast proportion. Sort of like claiming the Titanic was a boating accident. But this was no boating accident.

Truth be told, I almost canceled the appointment. Just two weeks prior, Justin had gotten tubes put in his ears because the ENT discovered he had some conductive hearing loss, probably brought on by a nasty ear infection.

Hearing loss. That was the problem. He's not talking because he's having trouble hearing.

Still, we had waited two months to be seen by the developmental specialist. We might as well go see what she has to say. Well, what she said was that my child was on the autism spectrum.

Huh? Come again?

Not my child. My child is affectionate. My child looks at me. My child just can’t talk yet! As the doctor (who I would come to loathe) pointed out, my child also didn't point. My child also did not express any wants or needs. My child didn't share any attention. My child had no interest in other kids. My child didn’t perform any adult directed activities.

We tried in vain, to explain, that he was just stubborn (a trait he inherited from both of his parents). She tried, with equal conviction, to explain, that in her twenty years of specializing with this disorder that she had no doubt that our child was on the autism spectrum.

Denial is a river that runs deep through our house. And I jumped right in because the water was fine. My son did not have autism. In my previous life, before I was a stay at home mom, I worked for ten years with adults with developmental disabilities, many of whom had autism. I've seen too many affected adults who spend their days rocking in a corner. Adults who are violent and frustrated because they can't effectively communicate. Adults with terrible scars on their bodies because they inflict injury on themselves. Adults who play with their feces because they "like" the way it feels. Adults who were sad and lonely and lost. That was not my son. Don't you dare tell me that is going to be my son.

The brain is an amazing organ really. I truly believe that it has a self-protective mechanism that allows you to only absorb bad news a bit at a time. And so it was, that the slow realization that Justin was on the autism spectrum began to drizzle into my consciousness, just a drop at time at first but then the deluge of reality quickly began to sink in. I started to see what that doctor had seen when she evaluated Justin. We were so focused on the fact that he wasn't talking that we completely missed just how disconnected he was. How he would sit forever and draw circles over and over. How he would escape upstairs to his room and just lie on his bed looking at nothing. I just thought he was my "good baby"...quiet, undemanding, never makes a fuss, a stark contrast to the glorious tornado that is his older brother.

Suddenly, I began to see him through this lens of autism and a part of me just died. That part of me that carelessly took for granted that my children would grow up happy and healthy. That they would go to their senior prom and have lots of friends. That they would go to college and pursue their passions. That they would fall in love and get married and have babies themselves someday. That feeling of gleefully taking life for granted and knowing that everything will work out fine, just vanished. It was replaced with questions. Why did this happen? Was it something I did or didn't do? Will he have friends? Will he be able to live on his own one day? Will he ever call me "Mommy" again?

But mostly, why did this happen?

That's the one question I've never been able to quell. That's the one that keeps me awake at night. How is it that one day we had a perfectly healthy and happy baby boy and a few scant months later we had a child who was slowly and insidiously slipping away from us? That question will haunt me for the rest of my life.

It's been nearly 2 years since that day on the beach and Justin will be 4 this summer. These 2 years have been filled with lots of speech therapy, occupational therapy and special education through our local Early Intervention program. He is currently, in a wonderful integrated pre-school 5 days a week where he continues to thrive.

Yet, I still think back to that woman's remark, because so much of the past 2 years has felt just like following a shadow. Always following that shadow of hope and praying it will lead my son to a place where his everyday life is filled with joys to be discovered, not obstacles to overcome.

Luckily, I can say that my son has come such a long way. But he still has so far to go.

Anybody with a child on the autism spectrum has probably heard them say (whoever "them" are) that the reason Early Intervention is so important is that after age 5, the "window of opportunity" starts to close. While I'd like to believe this isn't true, I must admit, I am starting to feel the heavy weight of that window closing. Not just on my son's ability to progress, but also the window closing on this phase of my life. For the past two years since Justin's diagnosis, I've been living my life in a fog, vacillating between feeling sad, scared and just plain sorry for myself. This summer I turn 40 and when I think back on the last 20 years they seem to have gone by in a heartbeat. Which is why I know the next 20 will do the same. I am feeling desperate to be in the moment and hang onto these days as much as possible. To savor the residual “babyness” that still lingers in my children. To enjoy the fact that my parents are still vibrant and healthy. To embrace my husband with a love that only grows stronger year after year. I am extraordinarily lucky and I can't have the window close on all of this. Not now. Not yet.

So I will write.

I will write to remember. I will write to rejoice. I will write because it's cheaper than therapy. But most of all, I will write so that someday I will have a record of this most precious time in my life.